# OK, so, getting to the end of our rope, perspective needed.



## muppet

I love giving my two cents around here and offering all sorts of advice (I'm sure you've noticed ) but I hate, hate, HATE asking for it. It implies I don't know everything...

Sarah is 14 now, and for the past 3 years, following her failed Remicade trial (3 infusions and then a severe serum sickness reaction that was quite dramatic), she's been on 37.5mg 6MP with 50mg Allopurinol and that has given her a few stretches of stability, but none longer than 5-6 months, and I suspect some quiet inflammation is going on throughout. She's probably 5 years from her last scope, which is way too long, but with all her hospitalizations 3 years ago I was in no hurry to put her through more.  I didn't really realize until tonight, thinking about it, how long it's been.

I don't think 6MP is doing it for her. Her quiet periods are too short and too fragile. Her drug compliance has not been 100% (3 days per month, she and we both forget at the same time) and her diet compliance has probably been worse (she's a teen, and often sneaky).

Her diagnosis is still technically UC, but I worry all the time that it's only because Crohn's hasn't let itself be known yet. Her GI at CHB says that Humira really isn't an option for UC. I think he'd probably recommend a total colectomy given that Sarah's inflammation is throughout her colon (but none, as far as we know, in the small intestine, but she's never had an endoscopy or a pill cam.)

She's starting a flare right now, and I'm not sure where to go. I think I want a colonoscopy to not only get a picture of her inflammation but to look for granulomas (even though I know they won't necessarily be found even with Crohn's), and I think a pill cam might be in order, before I start entertaining the idea of colectomy for her.

Input?


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## Stressed Mom

I'm sorry Muppet, I really have no advice to offer since I'm just learning more about CD myself and have learnt so much from reading your posts I wanted to say thank you for all your help and I am so sorry I cannot offer any help to you  I hope that one day I will know enough to offer guidance but am still so unsure of everything myself and look to you guys for help.

I really really hope someone can give you the advice you seek since you are always there to help us. I wish you and Sarah the very best and sure wish I could offer more.


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## my little penguin

Just remember you asked....
To figure out what to do
You need to know what the inside looks like
Upper / lower scope combos are the standard for kids now 
So I would ask for that with a pill cam
Has she had an mre recently?
Fecal caloprotectin test?
Not one test can tell the whole picture but the combination
May be able to tell you more which is important in her case
Crohn's vs uc .
How is her disease being monitored outside of blood in terms of tests or just physical symptoms alone??
Has her Gi recommended a scope/ imaging tests and you/ she didn't want them ? Or is this they offered a while ago and you didn't want it so they didn't bring it up.

As far as humira and uc don't really know if it would be effective but given until recently remicade wasn't approved at all for uc and given just because a drug is approved doesn't mean that it will be effective in your child either I would ask about trailing it after you have test results to get a clearer picture.

If she has any disease in her upper area ( stomach duodenum small bowel via pill cam etc) then you don't need to find a granuloma .
Although from what I read kids tend to have them more than adults .

The other thing is a lot of severe uc kids go on to be crohn's kids/adults since Ibd tends to spread over 10 years in kids .

Second thing puberty is majorly coming in to play since hormones cause the immune system to shift so what may have been in control before - not so much at 14.

EEN is an option for adjunctive therapy but not solo it may get her over the hump but again proven not to be as effective in UC 
EEN is more effective than TPN at least in crohn's .
Hence the need for more tests
May be worth a shot if surgery is the only option.

LDN could also be added to the 6-mp but has potential Neuro stuff .

I would suggest talking to her Gi about the tests see what info you can get and if it still uc talk through the options with the Gi
If not uc then you can make a new plan.

Second opinion places would be chop and cchmc .
We have been to cchmc twice for 2nd /3rd opinions 
Pm me if you need more info there .

Good luck


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## D Bergy

I would try antibiotics that specifically target E-Coli.  It has a decent chance of working, but I do not know if a doctor will go for this or not. 

I put down a low grade flare some years back using this approach, but I used an alternative treatment to accomplish it. 

I am really sorry that someone so young has to deal with this. 

Dan


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## muppet

MLP - We haven't turned down any tests. Since transferring Sarah's care to CHB, things have been very quiet and I think he just hasn't felt the need for imaging. Sarah's remissions have been fragile, maybe he worries scopes will exacerbate something. I've admittedly been somewhat distracted with the fight to get our littlest one state and then local services and haven't been at the wheel to the extent I have been in the past with Sarah.

I don't think she's ever had an MRE or CT of her abdomen in her life. Colonoscopies only. Doc seems confident of her UC diagnosis and also confident Humira is a poor choice for her. He's a well regarded specialist and I haven't had reason to doubt him so far.

CHB was our second opinion facility and we liked it so well we transferred. It would feel weird pursuing a second opinion elsewhere, but I guess in the case of surgery we would.

"Neuro stuff" with LDN could be an issue since Sarah has clinical depression and suspected neuropathic pain, not sure how that would all interact.

I've been thinking about EN to get her over the hump as a stand-in for another prednisone course, which she's already had many of and often becomes dependent upon.

Remicade was a very negative experience so I'm very gun shy about Humira.

I agree about doing all possible to "make sure" it's UC to the extent possible.


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## izzi'smom

I would absolutely look towards a scope for her (upper and lower as long as you're going), and an MRE or a pill cam, depending. Izz had an MRE after having symptoms that could have indicated sb issues, although her small intestine was clear. 

Do you feel that you have exhausted all med options? Izz had a colectomy date in August at Boston childrens...I cancelled it two weeks prior after the Tacrolimus they put her on cleared her up. (SHe's been on it since April/May) Mind you, Tacrolimus has it's own list of horrors for potential side effects and they aren't keen to leave children on it long term, but I'd still prefer it to life altering surgery that may help temporarily. (organ transplant recipients, including children, are on it long term). I'd like Izzi to be a bit older and able to participate in the decision to have a colectomy if I have the option.  
I'm so sorry you are facing this...and hope you find something that works for her.


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## muppet

I've had the same feeling about colectomy, Angie. It's been pushed many a time in Sarah's history and I've found ways to do end runs around it for 11 years, but we're running out of stuff to do.

I hadn't heard of Tacrolimus as a Crohn's/UC therapy before.


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## my little penguin

One drug you didn't mention was Mtx .
It may be worth a try.


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## muppet

Doesn't methotrexate inhibit mucosal healing? I'm not sure why anyone uses it for IBD.


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## ctrl z

I'd just like to chime in and say that I was severely depressed pre-LDN and it jerked me right out of that. While I'm not as super duper happy as I was the first few weeks on LDN, the energy it has given me has made me feel better.


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## my little penguin

All of the studies I have seen it has been proven to be as effective at treating crohn's as 6-mp including in children .

DS failed it but I can dig up the studies if you want.
There was no way I was even going to try it until I had read a few of the studies .


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## my little penguin

> Early studies showed that a successful course of steroids resulted in total mucosal healing in only one-third of patients,5 and similar rates have been reported after induction of remission with enteral nutrition,6 or even infliximab.2 However, as far as the relevance of mucosal healing lies in its impact of long-term outcome, it should be more reasonable to assess it during maintenance therapies rather than after short-term treatments. In that setting, mucosal healing has been scarcely evaluated. D'Haens et al3 retrospectively analyzed endoscopic healing in 20 patients responding to azathioprine. After a median of 24 months of treatment the authors reported 70% of total mucosal healing in colon and 54% in terminal ileum. Rutgeerts et al7 in a substudy of the ACCENT-I trial reported a total mucosal healing rate about 50% in 26 patients receiving scheduled infliximab therapy for 1 year. Recently, a higher mucosal healing rate has been reported in 26 patients treated with azathioprine after inducing remission with 3 infliximab infusions. Fewer data are available with MTX. Kozarek et al,8 in 1989, suggested for the first time that MTX could induce clinical remission and reduce steroid requirements in chronically active CD. Among 11 patients with clinical response, 5 (45%), all of them with isolated colonic disease, achieved total mucosal healing. Panaccione,9 in a series of 17 CD patients with clinical response to a 40-week course of MTX, reported total and partial mucosal healing in 10 and 4 patients, respectively. Our data agree with those previously reported with MTX, suggesting that clinical response to the drug is associated with mucosal healing in up to 40%–50% of patients, similar to what has been reported with other maintenance therapies. Although larger, prospective studies are needed, these data provide additional arguments for the use of MTX in CD.


From:
http://onlinelibrary.wiley.com/doi/10.1002/ibd.21015/full

So yes mucosal healing with Mtx
There were plenty more 
Use goggle scholar 
Hope that helps


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## kimmidwife

MLP 
I don't know what neurologic side effects you are talking about. LDN has almost no side effects. The main side effects are vivid dreams, mild dizziness, and headaches.
See this link:
http://www.lowdosenaltrexone.org/gazorpa/LDNFAQ.html

Muppet,
Caitlyn has done great on LDN and the only side effect she has had was dizziness the first few weeks and occasionally a headache. She is in remission for the first time since diagnosis. She also failed remicade and imuran. She had minor success with methotrexate but was never brought into full remission from it and eventually it stopped working.


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## my little penguin

> It is believed that LDN briefly obstructs the effects of brain endorphins (the brain's natural
> painkillers).   Sensing an endorphin deficit, the pituitary signals for increased production of
> endorphins, which re-balances the immune system, thus reducing the activity of the MS.  The effect
> lasts around 18 hours.


From:

http://www.lowdosenaltrexone.org/gazorpa/LDNFAQ.html


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## kimmidwife

Hmm, so I totally missed that but I don't think that reallly creates any negative side effects other then causing the brain to produce more endorphins which is not a bad thing after all endorphins make us happy.


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## my little penguin

Except in the case of a family history of depression or bipolar ( manic depression) since the exact cause of both is unknown and this drug is being used in developing brains.
Not saying it doesn't work clearly it does but it does clearly effect the brain just something to discuss with your neurologist and Gi since there could be an unknown risk .


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## my little penguin

> Naltrexone is an oral medication typically used to treat alcohol and opiate addiction. Some have suggested that low-dose naltrexone (LDN) might prevent MS attacks, help treat symptoms, and slow the overall course of the disease. Similar claims have been made for the use of LDN for treating AIDS, cancer, Crohn’s disease, and rheumatoid arthritis. Dr. Bernard Bihari, a New York physician, was the first to suggest LDN treatment for many diseases, including MS.
> Regular doses of Naltrexone are around 50 milligrams per day; LDN is between 1.5 and 4.5 milligrams per day. There are several theories about how LDN might produce beneficial effects. LDN may increase the production of endorphins, thus alleviating pain and improving mood. Alternatively, LDN may provide therapeutic benefit by decreasing the formation of free radicals, harmful chemicals that may damage nerve cells and other tissue.
> Until recently, only anecdotal evidence for LDN treatment of MS was available. Several recent studies involving MS and EAE, an animal model of MS, have produced preliminary findings. Two recent studies in EAE have suggested that LDN decreases nervous system inflammation, immune cell activation, and overall disease severity.
> A study of 80 people with MS was recently conducted at the University of California-San Francisco (UCSF). This study suggested that LDN treatment does not affect physical functioning, but does improve several measures of mental health and pain. A smaller Italian study focused primarily on the safety of LDN was recently published in the journal Multiple Sclerosis. LDN was generally well tolerated. This study also reported that LDN treatment was associated with decreased spasticity and increased pain. LDN did not affect fatigue, depression, or quality of life.
> The results of LDN research are suggestive, but not definitive. Many of these results are preliminary and have yet to be published. Both clinical studies mentioned are limited in size and scope: the Italian study did not include a placebo group and the UCSF study was not designed to evaluate disease activity. Furthermore, EAE research results often cannot be applied directly to MS, so these studies must be interpreted cautiously. Further research needs be completed to determine the safety and effectiveness of LDN in MS.
> Safety data for LDN treatment in MS is not currently available. The two clinical trials conducted have suggested that it is usually well tolerated. Some people have reported “vivid dreaming” when they begin treatment. LDN appears to be associated with mild abnormalities of cholesterol, blood count, and liver function in some people. It may also cause irritability.
> Although definitive information on LDN and MS is not currently available, some people may be interested in pursuing LDN therapy. Those interested should be aware of the limitations of the available research and should carefully discuss LDN with a health care professional before pursuing treatment.


From:
http://www.neurologycare.net/low-dose-naltrexone-ldn.html


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## my little penguin

> one or more GI side effects. The profile of the side effects is shown in the accompanying Table. In the patients with side effects, 24/74 (32.4%) had short-lived symptoms. In twenty of the 74 patients (27.0%), naltrexone was terminated owing to side effects. The rest of the patients were able to tolerate the side effects. The frequency of side effects for the group treated with 2.5 mg compared with the group treated with 5.0 mg daily differed in three symptoms, respectively:
> 1. Anxiety (11.9 vs. 21.7%)
> 2. Muscle pain (4.5 vs. 15.2%)
> 3. Diarrhea (6.0 vs. 13.0%)


From:
http://www.gidoctor.net/client_files/file/Naltrexone-Side-Effects-and-Efficacy-in-GI-Disorders.pdf


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## kimmidwife

I read this over but it seems to be the only place mentioning all these possible side effects. All the other articles I have looked at say over and over minimal side effects.
One interesting thing to note in this study was it was done by questionaire after the patients have taken the LDN. They did not use a double blind or placebo which are known to be more accurate. Anyway bottom line is it is overall a safe drug with minimal risks and seems to work for a lot of people. It is not going to work for everybody. There is not a drug which seems will work for everyone. Everyone's body is different and metabolizes drugs differently. All I can say is try things and see what works. I myself am the perfect example of someone who does not do well with medication. They either make me extremely sleepy or hurt my stomach terribly. I am probably the only person that gets sleepy from Tylenol. My daughter caitlyn had extreme allergic reactions to remicade and imuran, she got severe nosebleeds from pentasa and methotrexate stopped working for her so for us LDN has been our miracle, for you guys, MLP, iit has been remicade. My point to all this is I don't want someone to get scared away from trying LDN when it could possibly be the right treatment for them.


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## my little penguin

I am completely with you - what ever gets rid of the symptoms.
remicade has some bad side effects  but for DS it works and so far so good.


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## AZMOM

Im preaching to the choir when I say all kids are different. But Claire is doing better on her current regimen (including MTX) than she's done in a LONG time. 

I'd probably ask for the scopes (since it has been so long), pill or MRE and the fecal calprotectin along with her labs. If your gut feeling (pun intended) is that she's not where she needs to be, go with it. The few times I've ignored or tried to postpone this feelings are the times I have ended up wishing I didn't. 

Thinking of you all - 

Julie


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## crohnsinct

I know how we all love to put our carts before our horses but I am of the opinion that you really need to SEE what is going oninside before you can make an educated decision about treatments...although admittedly your options are slim.  I would second the upper and loer scopes and a request for pillcam. 

FWIW - we have a friend who has a daughter with UC who was on Remicade and I think Pentasa and she wasn't improving much.  They did a course of EN and it kicked her into remission.  Not saying it works overall in UC but it did in her case.  Their plan is now similar to ours..Remi and Pentasa and hit flares with EN.


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## Jmrogers4

Well said everyone, Muppet I can only offer my support and hope you get answers and a plan to move forward on.  We haven't gone the remicade out but were heading for humira when Jack's GI suggested LDN.  It has been a miracle drug for us as well but I know just as many that humira and remicade have been miracles for.  
We did use methotrexate for a time and it really worked in bringing the CD under remission unfortunately Jack had some lung issues and it is not an option for us anymore.


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## Dexky

EJ is scoped annually, admittedly due in large part to his psc, but still 5 years would drive me crazy.  Good luck Muppet!  I have no doubt you'll find the best plan for Sarah.


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## muppet

I hadn't really realized how long it's been since a scope. Normally I'd never let it go so long. The past couple of years have been pretty traumatic for the Warner family and I lost track of things I normally would not.

Last time Sarah was hospitalized (with her Remi reaction), her little sister was a newborn in the NICU at UCONN and we were terrified she was being brain damaged by her severe jaundice (that her birth hospital had all but ignored.) It's time to get back on top of things that I've let coast for awhile. Sarah was doing fine until last night when she said her symptoms were coming back. Her bleeding is very mild and she only cramps "when I think about it," but she's pretty scared already because she knows that we're getting down to the last meds.

Methotrexate and Tacrolimus are new options, to me, hadn't heard of them at all before this forum. And LDN, which her doctor at Children's Boston has already poo-poo'ed once a few years back.

I emailed Dr. B and he's going to get her in on the 3rd or the 8th to discuss the remaining options.


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## kimmidwife

How is her little sister doing now? I know it is difficult managing a lot of kids with different issues. Trust me we have five and four of them have issues! Good luck with the doctor appt and make sure to push for some testing. I have to agree that five years is way to long. Caitlyn has had a scope yearly until now when she is in remission and the doctor told us once someone has had these illnesses for more then five years or reached age eighteen then they need yearly scopes.


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## Tesscorm

I can't add to all the advice above but lots of support and understanding.  :ghug:

Has there ever been discussion re possible next steps for Sarah?


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## muppet

Izzy is catching up very quickly and hardly seems delayed anymore. She hates to make eye contact and has to be coached to do it, and when she's extremely tired, the "autistic" traits that earned her a diagnosis still surface, but every other time you'd never know. I still don't buy "autism" for her diagnosis, as autistic kids don't recover in the way that she has. A year ago she was like a little wooden puppet (even though we were SO relieved when she started talking). Now she struggles with a speech impediment that to me, sounds like apraxia but I've been assured again and again that it isn't.

I was told I needed yearly scopes after 20 years with the disease, I guess they keep pushing the bar down. 

I can barely remember my last scope. I guess I should get that going, too...


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## muppet

Tess - only that her old GI felt that total colectomy was her best option. She was always very optimistic that it would be a definitive cure for Sarah because she strongly bought the UC diagnosis in a way that I do not.


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## Tesscorm

It certainly seems worth trying all possible meds before taking that step... at least, as you've said before, until she's a bit older to make that decision.

Another possible option could be Cimzia???  I don't know if it would be any more effective than humira but may be worth asking about.  Crohn's mom 's daughter has used Cimzia.  I'm not sure where it is in the approval process - don't believe it's approved for Crohns/UC in Canada but is in the U.S. but, not sure about for children???


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## muppet

I've always strongly been for exhausting all the drug options before allowing surgery, and felt the same way about Remicade, but I've also watched Sarah suffer and be hospitalized and receive blood transfusions and be the subject of parades of medical students because of how "interesting" she is and I have to admit that if the new GI starts pushing for colectomy as a definitive resolution to this nightmare then I'll be very tempted to forget about the remaining 4 or 5 new "maybe" drugs that are out there.


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## Tesscorm

Yes, we've been very lucky in that Stephen hasn't had to endure severe symptoms, etc. but I can imagine how heartwrenching it would be to see your child suffer and then to ask them to take on more challenges!     Lots of hugs, not easy choices to make! :ghug:


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## Crohn's Mom

I think there was one other person on here who's daughter was approved to try Cimzia (Kimmidwife ? Caitylyns mom) is who first comes to mind.

As far as I know tho, Cimzia is not FDA approved for anyone under 18 yet.


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## muppet

I've been doing my own Crohn's thing for 29 years now, and Sarah's for 11. When I was first diagnosed I was too young to be scared and by the time I was old enough to understand why I should be scared, it was too familiar to be scared of. Crohn's generally has never scared me as I've always managed to pull something out and get things "normal" again, but in the past couple of years Sarah's disease has been damned stubborn about not going away and my formerly well-stocked confidence is getting really thin. I have to finally admit that she's been on Prednisone far too often in the last 3 years, and things just aren't where they ought to be at all.


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## my little penguin

Cimzia is not approved for pediatric use yet.
There are on going pediatric trials at cchmc.
I believe for crohn's only but I could be wrong
Good luck with the Gi discussions
Never easy


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## muppet

Methotrexate hasn't been strongly studied for UC yet, it seems.

http://www.ncbi.nlm.nih.gov/pubmed/20186931

I'm looking for something more recent. I'm able to get some limited journal access through my school account at NVCC but no very good ones. I'm limited mostly to abstracts.


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## izzi'smom

Muppet, if you are going to Boston Childrens, I would ask about Tacro. THat's who put us on it (We saw Dr. Essers before he moved to Seattle and Dr. Zitomerski, plus the surgeon, Dr. Linden). There isn't a ton of great info on it but there are some studies, and the physician that put her on it told us it is regularly used in Boston. THere is also an adult on this forum that uses it.
We struggled with Crohns vs UC as well, especially pre-surgically. (Izz presents as UC but a granuloma was found.) ID even tested her for some obscure things for us just in case. 
Expecially with Crohn's, but also potentially with UC, I have an intense fear that the surgery will just buy time, like all of the other drugs. I would be fearful that she would be better for a while and then start having Crohn's related issues again, and where would I be THEN? Unable to reverse it. Which is why, for me, I would much rather wait and try every drug available. 
I'm not sure if it has been great for UC as well, but there are peds clinical trials dealing with stem cell transplant right now. Izz doesn't score high enough on the CDAI index to count, but it's an option at the back of my mind. 
Wishing this were easier for you...


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## muppet

We're going to Children's Hospital Boston on the 3rd but to the Lexington office for GI which I've never been to before, and we're probably bringing Izzy (she never tolerates 30 minutes in the car, so 90 ought to be interesting) since my wife is working.

Hopefully there's a garage out there or something. I don't even know the name of the building out there and the website doesn't give one so I guess maybe it's just CHB at Lexington.

I wish I wasn't so clueless about public transit, we don't have such animals in CT.  I know how to use the Green Line and that's it. Apparently you can get to CHB in Lexington on the Red Line and then transfer to the #62 bus (how you tell which bus is the 62 I have no idea, I guess on the little LCD screen thinger?) to go to the front door of the building, which I'll have to recognize from the crowded bus window despite never having seen it before. Oy.

When we go to the main CHB campus I just drive straight into Longwood and park in the garage.


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## Sascot

Sorry I don't have much advice to give.  Just wanted to send my best - hope the appointment goes well.  I would second the EN - Andrew has done really well since he did the 8 weeks exclusive liquid diet.  Might be something that could just push her into healing enough for the drugs to maintain.


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## DustyKat

Hey muppet, 

One day in the garden doing hard labour and I miss all this! :yfaint: 

I have to be honest and say that I only skimmed over all the responses so only going on your original post...

If it were me I would have upper and lower scopes done. Then an MRE to visualise the small bowel and if need be a pill cam. You need to establish what is happening before you can move to the next step of deciding if treatment needs to be altered, whether that be tweaking or change of meds or heaven forbid surgery. 
Silly as it seems have them also do a thorough palpation of her abdomen, a pair of good hands can pick up issues that way too. 

Dusty. xxx


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## muppet

I'm on board with all the imaging, but I'm not sure if Dr. B will be. I'm glad people brought up Tacro and MTX because I wasn't even considering them. LDN will be mentioned at our appointment again but I'm expecting it to be quickly poo-poo'ed.


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## DustyKat

Why won't the doc be on board with it?


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## DustyKat

Imaging I mean.


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## izzi'smom

muppet said:


> We're going to Children's Hospital Boston on the 3rd but to the Lexington office for GI which I've never been to before, and we're probably bringing Izzy (she never tolerates 30 minutes in the car, so 90 ought to be interesting) since my wife is working.
> 
> Hopefully there's a garage out there or something. I don't even know the name of the building out there and the website doesn't give one so I guess maybe it's just CHB at Lexington.
> 
> I wish I wasn't so clueless about public transit, we don't have such animals in CT.  I know how to use the Green Line and that's it. Apparently you can get to CHB in Lexington on the Red Line and then transfer to the #62 bus (how you tell which bus is the 62 I have no idea, I guess on the little LCD screen thinger?) to go to the front door of the building, which I'll have to recognize from the crowded bus window despite never having seen it before. Oy.
> 
> When we go to the main CHB campus I just drive straight into Longwood and park in the garage.


We stay right at the hotel on Longwood, as I have a bad time with public transport. We stayed for 3 days last year, and not once did we get off the green line back at the hotel. We walked three miles one day after getting off (good thing for strollers for the kids lol...the first mile and a half were in the wrong direction and the hotel was two blocks from where we got off the bus lol!!) Good luck with Izzy in the car...mine were cooped up for 6 hours in the car and we had 2 appointments back to back when we got there...ugh. Not my best day for sure!


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## kimmidwife

Hi Muppet,
Caitlyns previous doctor before we moved to florida tried to push cimzia on us. I did the research before hand it said not approved yet for pediatric use. When I brought this up he poo poo'ed it and said it is fine. I decided no and when I brought up LDN he also poo pooed it but I walked in there and said listen this is my child and this is what I want to try and write me the scrip and he did.


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## killcolitis

Sorry to butt in but I have a few thoughts.  I have a child dxed with UC at age three two and also without remission. I actually want surgery but like you fear the CD dx post colectomy.   Just wanted to chime in as we've had a second opinion from Dr B at Boston as well.  He doesn't really hold much hope in mtx but I think he said it was worth a shot (this is for UC).  We decided against it as my daughter was previously treated by the team of docs in Italy who published that UC/MTX study.  They felt it was a long shot for her since they believe it works for some but not very well long term.  If it's actually CD though it might be worth it if you're trying to avoid surgery at all costs.
Would you consider a fecal transplant? I ask because Boston Children's has approval to do this by scope for UC on an experimental basis.  My daughter was supposed to be the second child to have this done there but she was too unstable to travel (we don't live in the US) so we didn't go through with it.  It was Dr B who arranged it - it might be something else to keep in mind?


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## muppet

DustyKat said:


> Why won't the doc be on board with it?


He seems very confident in the UC diagnosis and I think he might find it overkill. He's a very conservative doctor.

Angie - Thankfully it's only about a 90 minute to 2 hour drive for us to Boston and so far we haven't had to stay. I don't think we could afford it. Although in the future it might be nice to make scheduled appointments into little mini sight seeing trips and hit some museums or something. I really enjoy some of the stuff in the food court at Faneuil Hall.

I may drive all the way to save time, but if Izzy ends up going I may use the T because the novelty of being on a "train" might sell the whole trip and keep the peace.

killcolitis - thanks for the insight, I may talk to Dr. B about a fecal transplant for some symptom relief for Sarah.


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## Dexky

If it's been 5 years since the last images, surely you could convince him it's time for scopes.  I'd be very uncomfortable throwing this or that at it without certainty of what you're dealing with.


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## muppet

Oh there's no doubt of the need for scopes. I dunno if we'll get a pill cam or MRE but will definitely be talking about both.


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## muppet

Wife (Chris) has swapped her nursing shift on the 3rd so that Izzy can stay home. I guess that's best in terms of giving my full attention to Sarah and Dr. B, but I was sort of hoping to use the long car ride as sort of a "training" exercise to get Izzy used to the idea of more significant disruptions in her routine.

Oh well, there will be other, better chances for that. We brought the kids to Mystic for a whole day over the summer and Izzy tolerated that spectacularly.

I think Dr. B considers things like LDN exotic and untested and therefore not good medicine (yet) but I really don't have a great read on him yet as we've just started with him. We were seeing Dr. Leichtner, who was my childhood GI, but he's off on sabbatical and who knows if he's coming back as he's got to be nearing retirement. I suspect he'll think a pill cam isn't warranted either but should I press for it? It's pretty much a roll of the dice whether it'll be any more informative than an MRE, isn't it?


----------



## killcolitis

From our experience and that of friends whose children have been treated by Dr B he's fairly open to alternative treatments and understands that parents have the same goal as he does, which is to get their child healthy.  He has said this to us several times and to a friend whose daughter he diagnosed with the worst case of uc he'd ever seen.  She went to two years of treatments (meds and alternative) before having her colon removed, which was his initial recommendation for her.  He supported her parents in trying alternatives. That said, I don't know if he would consider rxing LDN (likely not) but then, as I mentioned, he will consider (or did last year) FT so it may be possible.  Good luck - I do think he's a very good doc and we've seen quite at this point.


----------



## Tesscorm

killcolitis - haven't seen you around, just hoping that your daughter is doing alright!  :ghug:


----------



## killcolitis

Thanks Tess. Stephen too.  She's flaring. I'm "here" I suppose - still scrambling and trying to figure things out...Thanks for asking!


----------



## muppet

When I talked to Dr. B about continuing Sarah on 6MP by adding allopurinol to prevent her liver toxicity issue, he described the protocol as "turning cartwheels to get things to work", so I dunno... 

We DID end up doing it, and it worked... OK, but not perfect. That's what we're on now.


----------



## killcolitis

Muppet, our GI is a colleague of Dr B's and she said the same thing. My daughter's liver enzymes where 10 times the top limit on 6mp and she's allergic to imuran but the doc didn't want to add the allupurinol.  That's not really an "alternative" treatment though I suppose?  It's not worth the risk in the case of UC they believe.


----------



## muppet

Sarah has no allergy to 6MP (although she seemed to develop "chronic" ITP concurrent with starting Imuran) and the allopurinol protocol works very well for her in terms of controlling the "bad" metabolite. I don't really consider it alternative, but Dr. B seemed to think it was on the edge of good medicine. In any case we'll get to talk to the man himself in less than a week.


----------



## my little penguin

Good luck next week .
DS was on Allopurinol + 6-mp due to liver toxicity
But we could never increase the dose to therapeutic levels without more liver issues ...,
Hope the Gi appt brings about a good plan.
I don't think you can discuss meds until you know what those insides look like.
And not looking just because they believe its uc shouldn't be the reason.
Before DS scope last year the Gi believed it was EoE and or allergic colitis .
Looking every where is what got us the dx .


----------



## muppet

I guess protocols are changing because in 11 years she's never had an upper endoscopy or any radiology of her abdomen that I can remember, but it's definitely on my checklist for next Thursday.

Sarah is therapeutic on 6MP according to her Prometheus tests. One concern with the continued use of those meds is that the local UMass lab that does her Prometheus test is the ONLY local lab covered by our insurance for the test, and they've just been bought by Quest. I'm not sure how or if that will affect us yet. The test is prohibitively expensive without insurance coverage (though I think we still get to pay the negotiated rate, it's around $650).


----------



## muppet

OK so not to belabor the point, but the checklist for Thursday is:

[ ] discuss exclusive EN as an alternative to Pred to get this latest flare under control, maintaining 6MP as the maintenance med

[ ] discuss upper and lower scopes and either an MRE or pillcam or both

[ ] discuss colectomy but only insofar as to get on the same page regarding expectations (ie, if there is small bowel involvement, I'm totally against it, also would like to try other therapies first.)

[ ] discuss Tacrolimus and/or Methotrexate (not a fan of injections as Sarah already has not only compliance issues but a pathological fear of needles)

[ ] discuss LDN and possibly push for this as an addition to 6MP?

[ ] discuss fecal transplant as a possible thing to try as a supplemental therapy to quiet down Sarah's symptoms and let the 6MP do its job


----------



## Clash

Good luck muppet, I hope the appointment goes well and you are able to get some things in motion. C is on methotrexate in pill form once a week, so if injections are an issue you may want to include the fear of needles when discussing MTX with GI.


----------



## Tesscorm

Good luck Muppet!!  I hope you come out of the apptmt with a solid plan! :ghug:


----------



## muppet

Sarah is pretty ticked at me right now for pushing the EN over prednisone plan.


----------



## Dexky

Sounds like a solid plan!!  Good luck!


----------



## killcolitis

Good luck! That's a good list I think.  I don't think (from experience) he will go for EN but then you can always push more than we did.  We decided to try out of pocket since none of the GIs would rx it and it was really expensive. And it did not work.  
I hope you come up with a solid plan next week.


----------



## my little penguin

Just be fore warned - Gi may come back with
Current literature/studies did not show improvement or induced remission for colonic disease ( uc) when using EEN.


----------



## izzi'smom

If need be, the yawkey inn offers free housing on a limited basis. If they have no rooms available, they have a number for another place. 
We stayed in a hotel twice...it was crazy expensive (plus her dad and I got two rooms as we are not together). 
Wishing it goes well... 

http://www.yawkeyfamilyinn.org/


----------



## muppet

my little penguin said:


> Just be fore warned - Gi may come back with
> Current literature/studies did not show improvement or induced remission for colonic disease ( uc) when using EEN.


I've only just begun looking up abstracts on this. If the literature doesn't support it then it may be a non-starter, but I've always been a big believer in bowel rest and it worked for me as a kid when my diagnosis was UC (but we know how that turned out.)


----------



## muppet

And of course I don't believe she has UC. I think it's CD. Dr. B isn't impressed by my intuition.


----------



## crohnsinct

my little penguin said:


> Just be fore warned - Gi may come back with
> Current literature/studies did not show improvement or induced remission for colonic disease ( uc) when using EEN.


O has CD only in colon (I wonder if it is really UC and months later did say he found inflammation in stomach and rectum but still not sure if that meant - disease or just plain old inflammation) and her doc said there was a good amount of new literature showing that it is effective for colonic disease.  I don't know if that meant colonic Crohns only or if that would apply to UC BUT it worked for O and it worked for her friend with UC.  I say there is no harm in trying right?  Well except for a delay in starting a treatment that would work but I would think you would see some kind of results within two or so weeks and then can evaluate.


----------



## my little penguin

CIC - I am with you in trying EEN just wanted muppet to be prepared with literature references since the older papers all state the same no improvement .
That will give him the best shot at convincing the doc  kwim :wink:


----------



## killcolitis

Crohnsinct - Do you have any links which show efficacy for colonic disease? I'm asking because my daughter has UC, her doc uses EEN as a first line treatment for small bowel/upper CD.  She has refused our many requests to try it for my daughter (it really doesn't work for UC from everything I've read, including the book Beat Crohns which is very well referenced).  Like muppet, we wanted to try it on the off chance that she actually does have cd (Dr B said no to us too by the way).  
She refused for the reasons stated (does not work in her clinical experience and makes things worse often, no research backing it etc).  We've tried several formulas over the years on our own and they all have actually made her worse. I want to try (again) for tube feeding (she is completely against) and would love to show her some compelling research (though she is a top pediatric doc and doesn't appreciate this type of thing we are truly running out of options before surgery).  I've looked on pubmed and can't find anything much.  
It's great that it worked for your daughter and that her GI was open to it.


----------



## Johnnysmom

Is there are certain age or number of years after diagnosis when they become more confident of the UC diagnosis?


----------



## David

Muppet,

How is her height and weight for her age?

Any extraintestinal manifestations?

When you say she is starting to flare, what are her exact symptoms?

Have you ever tried any dietary changes with her?

Why is the doctor pushing colectomy?  Does he feel there is a danger or is her quality of life low?

Are you willing to try experimental treatments that have a very good safety record?


----------



## AZMOM

The only thing I was going to add was a comment on MTX injection vs pills. Due to the absorption issues with IBD patients and the time it takes to determine if it is going to be therapeutic, our doc said the injection route was preferred. 

I know you may not even be faced with that choice but wanted you to have that info. 

Julie


----------



## my little penguin

^^^ yeah that 
That was why DS did injections


----------



## Clash

Yeah, I agree with MLP and AZMOM, our doc did mention this about the injection too. We opted for the the MTX pill. Also, the side efects of nausea, flu-like ickiness is more prevalent with the pills. C hasn't experienced any reactions like that at all but others on here have. C responded really well to the MTX, he hasn't had any CD symptoms since starting MTX with his Remicade but I haven't read alot of posts about members that have responded as well as he has.


----------



## muppet

David said:


> Muppet,
> 
> How is her height and weight for her age?


She's a monster.  Definitely not underweight or failing to thrive. Like me she tends to gain on Prednisone (with one exception where it failed to reverse a flare which led to our failed Remi trial).



David said:


> Any extraintestinal manifestations?


Too many to count. She has pain in nearly every area of her body, most notably and often her shoulders, hips, and ankles. Her complexion is almost always grey and terrible, but this may be down to being chronically dehydrated (something I wonder if EEN might address, and I'm interested to see how/if her joint pain would be affected by EEN.) The truly intense joint pains, especially the upper body ones, started after the serum reaction to Remicade and have never stopped. One of the symptoms of her reaction was that her shoulders and hips became immobilized by pain. She's never been quite that acute since, but the pain is still there intermittently, but the specialists both GI and Rheumatologist insist that it can't be a lasting effect of the Remicade.



David said:


> When you say she is starting to flare, what are her exact symptoms?


Abdominal pain and cramping (possibly masked by menstruation last week, but still continuing this week) and bleeding. Mucous on/in the stool. Her stool isn't soft or narrow, though. It's an unusual stool quality for her (but I'm relying on her self reporting.)



David said:


> Have you ever tried any dietary changes with her?


Low residue, no dairy, and we stay away from fast food (although we still rely on it maybe twice a month, as things get very hectic around here.)



David said:


> Why is the doctor pushing colectomy?  Does he feel there is a danger or is her quality of life low?


The previous practice in Hartford was unimpressed by the quality and stability of her remissions on 6MP and she failed 5-ASA and eventually Remicade. They always told me it would either be Remicade or colectomy for her. 3 years ago we were told to choose one or the other when she was inpatient and not responding to Solumedrol and had received two transfusions due to heavy bleeding.

The new practice hasn't pushed colectomy yet but I think it's in the cards. Dr. B says our 6MP/Allopurinol regimen is "turning carthweels to get things to work" and he doesn't seem impressed with non-approved therapies generally.



David said:


> Are you willing to try experimental treatments that have a very good safety record?


We have broached all sorts of things with both old and new GI like helminthic therapy, fecal transplant, stem cell trial, all with very poor reception on their part. I'm willing but not without the support of an amenable GI to keep an eye on things.


----------



## muppet

Johnnysmom said:


> Is there are certain age or number of years after diagnosis when they become more confident of the UC diagnosis?


I don't know about that but my diagnosis changed from UC to CD after 20 years.


----------



## xmdmom

Muppet 

I couldn't find anything in the recent literature that supported EEN as primary therapy for ulcerative colitis.   I actually was unable to find any studies in which it was studied in UC.  Seems that it's only used to support nutrition in people with severe UC.

Does your daughter's doctor use blood tests (e.g. Prometheus) to help distinguish UC from Crohn's?


----------



## David

When she had the reaction to Remicade, was there any lung involvement?


----------



## muppet

David - None that was obvious.

xmdmom - Sarah did have a result on a Prometheus test that showed potential CD indicators. I don't remember the details. Dr. B feels the test is not reliable for discerning the two, or didn't at the time.


----------



## izzi'smom

Our doc isn'r a fan of Promethus testing either. 
I am also frustrated by the lack of interest in stem cell transplantation. Izz isn't sick enough to qualify for the trials, nor has she failed all of the meds required, but I believe it is a promising angle. I was concerned about the potential sterilization until I talked to a friend with UC who had trouble conceiving until doing in vitro...he said the lesser of the two evils is infertility (2 children-1 adopted, 1 in vitro) <3


----------



## DustyKat

I know you are going to discuss imaging with the doc and he says he is confident in his diagnosis of UC but when push comes to shove this isn't his daughter. I don't think it is at all unreasonable given your history and the prospect of Sarah facing a total colectomy that you are reassured that the diagnosis is UC. I would want all bases covered and request both an MRE and pill cam. They each have their own advantages. 

Good luck with the consult! 

Dusty. xxx


----------



## kimmidwife

I agree with dusty that you need some good imaging before making any decisions definitly push for it!


----------



## crohnsinct

killcolitis:  I was basicaly going by what our doc said but I do remember frantically looking around for supporting documentation and found something.  I want to say it was on here but I would be lying if I said I was sure it was here.  I am visiting family but will look for it when I get a chance because I know I am not nucking futs!  I DID see it!


----------



## DustyKat

Literature that I have seen still supports the theory that EEN is not effective for UC but when it comes to CD the consensus has shifted somewhat from it being primarily used for small bowel disease and is now often suggested that it be used regardless of location. As stated in the summary of this article: 

http://www.naspghan.org/user-assets/Documents/pdf/PositionPapers/Use_of_Enteral_Nutrition_for_the_Control_of.29[1].pdf

...there is a paragraph that discusses location of disease and conflicting evidence regarding its effect on colonic disease.  

Dusty. xxx


----------



## kimmidwife

Tess,
Cimzia is not yet approved for children in the US. They are working on approval from what I understand.


----------



## my little penguin

^^^^ yeah that
Cchmc ( Cincy) has a pediatric trial going on now


----------



## crohnsinct

Dusty:  That looks like the paper I read supporting using EN for colonic disease but like I said before, I am not sure if the colonic involvement and response to EN would be different for a CD patient than a UC patient.  All that said, we do have a friend who has a daughter being treated at Yale Children's Hospital and they got their doc to agree to use it around the same time we did and she responded remarkably well.  She was on Prednisone and Remicade and since EN just uses Pentasa.


----------



## muppet

Except for the one linked here, I've found nothing to support EEN with UC. Still, I'm going to push the issue as I think it's worth a try before we get into the "surgery is all that's left" area. If nothing else it might help cement her UC diagnosis, right?

I've decided that using the trains will double our travel time, so I'm going to drive straight into Lexington and pray for parking when we get there.


----------



## muppet

So... we're here 45 minutes early. Better than stuck in traffic I guess. I even had time to pick up an EZ Pass transponder.


----------



## crohnsinct

Good good luck!


----------



## Sascot

Good luck, hope all went well.


----------



## Clash

Good luck, muppet!! Hope all goes well!!!


----------



## upsetmom

Good luck!


----------



## Farmwife

Hear anything yet? I'm waiting!!!!!!


----------



## Jmrogers4

Farmwife said:


> Hear anything yet? I'm waiting!!!!!!


 Payback...

Good luck Muppet


----------



## Crohn's Mom

Good luck ! :hug:


----------



## Farmwife

Jmrogers4 said:


> Payback...



:ywow:NOOOOOO I would NEVER do that!



I'm still waiting.:voodoo: What is he not answering you?????


----------



## izzi'smom

WIshing you luck today!!


----------



## muppet

We're still here. He's willing to try EN but not optimistic. Waiting for him to come back we're using a lot of his time tonight...


----------



## muppet

He said Tacro is overkill for Sarah but he'd try it to avoid pred if we want. He's a fan of vancomycin. Says LDN is probably baloney.


----------



## my little penguin

Any imaging to determine where you stand diseaes wise??


----------



## muppet

Top and bottom scopes and MRE.


----------



## AZMOM

Good. Now you'll know "where u are"


----------



## Farmwife

GOOD!!!!
Tell me did you leave the GI shaken in his boots????:voodoo:

Were you authoritative and demanded what you wanted?:voodoo::voodoo:


----------



## AZMOM

Or logical, calm and organized? 

(Teasing u Farmwife)

J.


----------



## my little penguin

Woohoo


----------



## muppet

As logical, calm, and organized as I could manage. Dr. B generally lets me get about 4 syllables out before he starts filibustering again.   I think he's trying to keep me from rambling but the result is that I don't feel quite like he's listening to what I have to say. Still, though, he did address all my questions even if he made me feel like I was on a timer to get them out.

He's going to talk to a dietician and figure out what formula is best for Sarah (he kept stressing that you can't just go and start EN in a day, you have to plan it all out and get insurance approval and get a homecare company and etc etc.) In the meantime, I guess we're not treating her flare (for a week?) even though initially it seemed she'd be on vancomycin in the interim. That seems to have been dropped.

He was the one to bring up fecal transplant as a (low probability of helping) option. He said he'd do it by scope but wouldn't combine it with a diagnostic scope since he wants to take lots of biopsies.

He said Tacro is more risky than prednisone in terms of side effects, but I stressed how steroid dependent Sarah always ends up and he said one nice thing about Tacro is that you can just stop it cold. So, it seems Tacro will be an option for us to try, at least to reduce flares (not as a maintenance drug.)

He thinks Humira is a logical next thing to try even though it's only recently approved for UC in adults, and according to Dr. B it barely squeaked by because the findings were terrible.

He said he's spoken to the woman who headed "the" LDN study (not sure if there's only one major study, or...?) and he was unimpressed with her results. He says he and his colleagues have tried it and their results have been poor.

We didn't discuss methotrexate at all. 

I'm wondering if I should be trying the Vancomycin (he wanted to pair it with a clean out) since he seemed to favor that option over EN, to the point that I'm really doubting my decision now. :-/


----------



## Johnnysmom

Sleep on it and call back tomorrow and tell the nurse you want a change if you are more comfortable with the Vancomycin.  You G.I. seems very reasonable and logical.  

If a drug works well for UC will it also work well for crohn's colitis?  Is it more about the type of disease or the location?  

It is hard to go through all the work of EN if the G.I. isn't completely on board.  Has Sarah changed her mind about it at all? My son gets so upset if I even mention it.  I am not sure how far I would push him on it.  

I am sure you will get a clearer idea of things after the scope and MRE.


----------



## muppet

I think ideally we'd start EN before the scope or imaging, just because it will likely take a while to get the scopes lined up. The logistics of having this stuff done in Boston complicates things, and Dr. B said we may admit Sarah to the hospital for clean out due her ITP (though we haven't done that in the past).

He's fully willing to do EN properly and with all earnest, is the impression I got. He just doesn't think it's likely to work.

Evidently UC and CD differ in what's efficacious, like Humira works for CD but for UC, not so much.

I'm curious to see what EN will do for her EIMs like her total body joint pains and poor complexion. I know she doesn't eat particularly well except for at dinner time when I get to supervise exactly what and how much goes in her mouth, but if Vancomycin is likely to work well for her, and Dr. B is endorsing it fairly highly and with a lot of confidence, maybe I'm being a jerk if I delay that.


----------



## my little penguin

Muppet - fwiw our gi also talked with the head study doc of LDN - he agreed to let us try it but wasn't sure if would be enough in DS case.

Before the stoning crew comes out. :ack:
We chose not to go that route given the info the Gi told us and our sons history .


----------



## Johnnysmom

I agree with you MLP.  I would have to have no proven options left before I tried LDN.  I think it shows a lot of promise but I haven't seen enough evidence to forgo something like Remicade in it's stead.:shifty-t:


----------



## muppet

Sarah was adamant that she wants the tube rather than having to drink 8 shakes a day. I'm surprised, but Dr. B isn't. He says that's common. I wonder whether Sarah might not like the idea of having a visual indicator of her UC/CD to go with the illness she's been trying to explain to her friends for years, but I tend to overanalyze stuff like this. She's already been making jokes to her friends via text/facebook about her new "piercing".

Dr. B says he may have Sarah admitted for a night to place the tube and observe her with it for some feeds. I have no idea if that's typical or not, seems overly zealous. Maybe we can get the tube and the scopes all done at a go this way..?


----------



## crohnsinct

muppet said:


> . Dr. B generally lets me get about 4 syllables out before he starts filibustering again.   I think he's trying to keep me from rambling but the result is that I don't feel quite like he's listening to what I have to say. Still, though, he did address all my questions even if he made me feel like I was on a timer to get them out.. :-/


Well now you should be used to this 

Sounds like it was a VERY productive appointment...scopes and a few different options. 

On EN in general mind you not specific to UC...while it has great success at achieving remission it isn't that great at maintaining unless of course there is another maintenance med involved so I am assuming she will continue her current meds.  But the real reason I started this was to tell you I have recently seen two studies (and forgive me but I don't have them at my finger tips like some people we know<()  ) that say once EEN is completed that a maintenance dose of EN will extend the period of remission.  So if you do this don't be a dork like me and let your daughter drop it cold turkey...keep a shake or two going in daily.


----------



## crohnsinct

Before the stoning crew comes out. :ack:
.[/QUOTE said:
			
		

> This is your day.  No stoning allowed...but can't protect you tomorrow!
> 
> I am also a member of the watching LDN and very interested but not ready to pull the IV line yet!


----------



## muppet

Ugh. While he might not be interested in hearing me finish my paragraph, he's definitely no Jeff Hyams, and THANK GOD.


----------



## izzi'smom

NG tube? Ours was done in office, and we were sent on our way, but our experience wasn't the best (we were the first voluntary ng for en). I think with some teaching it could easily be done outpatient but understand why he may want to observe. You have to start the feedings super slow or they will vomit.


----------



## ctrl z

If your daughter has any trepidation of being seen with her feeding tube, I've seen several youtube videos of pre-teens and teens inserting their own feeding tubes and they give really good advice also. She may be able to relate to them and make her feel more confident inserting and removing her own tube. I was really impressed with this one:

[youtube]YJIFOCbPTjo[/youtube]


----------



## EthanClark

Muppet,
We recently started EEN with our 3 yr old son Clark. We went to the hospital to have the tube inserted and and have him monitored for a few hours. We learned alot but when we got sent home we were told to do a normal feeding that night. It must have been too fast and the formula although at room temperature was too cold. He kept saying how cold it felt. He ended up throwing everything including the tube up around 2am. I had to take the tube out and we put it back in the next day with the help of a home health nurse. It was pretty traumatic for him and my husband who was crying as much as he was. So go very slow and build up to the max dose over a few days. He is however doing great now. More energy and much happier. He did have a hard few days without food but has now gotten used to it. I would suggest going to the hospital if you have the option so it is done correctly and you can ask all the questions there on the spot and get answers. Good Luck


----------



## muppet

CHB Radiology called and left a message today wanting to schedule Sarah's MRI but I haven't returned it yet. If Dr. B is going to want her inpatient to do the NG tube, and inpatient to do her scope cleanout, it seems like we could kill 3 or 4 birds with one drive to Boston, here.


----------



## crohnsinct

Wow!  Muppet I totally missed your post about Sarah wanting the ng tube.  How awesome that she came around like that.  I remember when you posted she was pissed at your for suggesting it.  I really really hope it makes a difference for her. 

I  like your point about killing a few birds with one stone.


----------



## muppet

I think the novelty will wear off on day two for her, but we'll see.


----------



## Crohn's Mom

It may indeed wear off , but right now I think her attitude about it is awesome  -such a rough age anyhow without these things :hug:


----------



## DustyKat

^^^^Ditto! She surely is a champion! 

The consult sounds like it was productive.  

Any chance of getting urgent scopes and MRE done? 
My concern is...if there is even the slightest chance that Sarah may have Crohn's having the testing done after the commencement of EEN may well wipe out your evidence. 

Dusty. xxx


----------



## muppet

I'm not sure how the timing will go down right now. I understand the concern, but at the same time, Sarah's blood clotting disorder dictates that treatment not be delayed by much.


----------



## DustyKat

Ugh! I hate that place between the devil and deep blue sea.  

In my thoughts muppet. :heart: 

Dusty. xxx


----------



## Sascot

Well it sounds like you're finally getting somewhere, if not quite where you wanted :thumleft:.  Hope it goes ok with the NG tube, don't blame her for not wanting to drink the stuff - I tried Andrew's once - yuck!
When Andrew had his tube put in, they admitted him overnight and they had to sign off in a booklet that they had taught me everything and that they had watched me give him a couple feeds.  It wasn't nice for a couple days but after that we both got used to it.


----------



## muppet

One of Dr. B's nurses called back (it seems like every nurse we deal with is named "Lori", LOL) and said they want to get Sarah in next Tuesday for an in-service on the tube at which time hopefully the insurance stuff will be figured out. They want us to have a DME company and maybe a visiting nurse lined up (which I think is overkill on the nurse thing, but whatever.)

I told her Tuesdays are out all month because of my wife's schedule so she'll try to make it another day. I told her that Dr. B had originally talked about doing this inpatient but she felt it wasn't necessary. Then I told her that if Sarah is going to be admitted for scopes then maybe we could do scopes, tube, and MRI in the same admission and she said she'd work on that and get back to me.

They're not letting any grass grow under their feet, that's for sure.


----------



## muppet

Well,

We tried picking up some prescriptions at CVS this morning and our FSA card was declined for the second time this year. The first time I figured it was the usual lag in getting the card activated with our new FSA balance, but now I know it's broken.

Apparently, when I enrolled for my employer sponsored benefits this year, I chose to put funds both into my usual FSA plan, and then, because the cap on FSA accounts is lower than ever before this year (thanks, ACA?), I also put funds into an HSA account to make up the difference.

Apparently, though, if you have both an HSA and FSA, federal law limits the use of your FSA account to eligible vision and dental care and NO medical or pharmacy coverage as we have always used it for.

I'm SO glad our benefits in this country are so simple and easy to access!!

So now I've got $2500 that I can't use to pick up my family's medication at the pharmacy. I have to somehow spend that entire total on dental and vision care (as if!!) or else I'll lose it all at the end of the year.

THEN, I've got an HSA account with $1000 in it, and a weekly deduction to eventually deposit another $1000 over the course of the year that I have no idea how to access or use and even if I did, it's not enough to cover our high medical deductible, let alone our annual prescriptions.

I fired off an email to our benefits manager, but I have no idea what, if anything, can be done. I enrolled online without fully understanding the restrictions (and the online system never popped up a warning about combining FSA with HSA, which would have been great...)


----------



## muppet

:ymad::ymad::ymad::ymad::ymad::ymad::ymad::ymad:

IT'S ALWAYS SOME DAMN THING. THERE'S ALWAYS SOMETHING.


----------



## DustyKat

Sounds like a complete and utter nightmare muppet.  

Dusty. xxx


----------



## muppet

It doesn't help that I was also confused by the options last year and made what I thought was a bad choice. I contacted the benefits folks about this same time last year asking if I could shift anything and in the end decided I was OK and there was no need to change anything.

BUT

now that I've actually GOT a need to potentially alter my elections (if that's even possible) they will no doubt remember that I'm the schmuck who screwed up his own benefit elections LAST year, too, which won't help.


----------



## DustyKat

What scares me is that you are wicked smart guy muppet so if you are having trouble with the system how many others are in the same boat as you?


----------



## muppet

It's nice of you to say that I'm a wicked smart guy, but I am clearly a complete moron.


----------



## DustyKat

No comment. :lol:


----------



## izzi'smom

Sorry, muppet. Like these kiddos healthcare doesn't include important enough decisions without worrying about whether or not our insurance will help us pay for them. 

I'd send you a hug but that pic of the mask is haunting me. I'm scared.:shifty-t:

anda-wave-t:maybe a waving panda will make my reply feel warm and fuzzy.


----------



## muppet

...mask?

My avatar is a candle on a black field. What mask?


----------



## izzi'smom

Can't remember where it was posted...but you posted a pic of yourself.


----------



## muppet

Never with a mask. Is this a crack about my face...?


----------



## Farmwife

I remember that pic Angie. He was working in what looked like an attic waring a yellow jacket like my little boy has.:smile:

But I thought he was trying his best to impersonate Princess Leia!:rof:


----------



## muppet

OH, that mask.

It's a commercial respirator I wear when I'm casting resin for jewelry.


----------



## Dexky

muppet said:


> Well,
> 
> 
> Apparently, though, if you have both an HSA and FSA, federal law limits the use of your FSA account to eligible vision and dental care and NO medical or pharmacy coverage as we have always used it for.
> 
> I'm SO glad our benefits in this country are so simple and easy to access!!
> 
> So now I've got $2500 that I can't use to pick up my family's medication at the pharmacy. I have to somehow spend that entire total on dental and vision care (as if!!) or else I'll lose it all at the end of the year.
> 
> THEN, I've got an HSA account with $1000 in it, and a weekly deduction to eventually deposit another $1000 over the course of the year that I have no idea how to access or use and even if I did, it's not enough to cover our high medical deductible, let alone our annual prescriptions.


I know what an HSA is, but what's an FSA?  Is it supplemental to your employee health insurance?  

The devil's always in the details!!  Hope you get it sorted soon!


----------



## muppet

FSA is supplemental to insurance and we use it to cover our high deductible plan.

Of course, coverage is getting worse and worse for higher and higher premiums because the ACA was gutted because Obama is a poser and Congressional Dems are all spineless... but that would be politicizing, right?

With a public option, we'd not be in this mess, but we must protect corporate profits at all costs in the US, to a comical degree. They don't even hide it any more, because half the country believes it's actually in their best interest to govern this way.

The upshot here is that we have a $3000 liability and we're $2500 in the hole so there will be a $5500 gap in our budget this year that I'm not sure I can cover, unless I can talk the benefits people into making 11th hour changes for us.


----------



## Farmwife

muppet said:


> _*Of course, coverage is getting worse and worse for higher and higher premiums because the ACA was gutted because Obama is a poser and Congressional Dems are all spineless... but that would be politicizing, right?*_
> QUOTE]
> 
> 
> 
> :thumright::rosette2::thumleft:


----------



## muppet

To be fair, Republicans are a lost cause and so even implying their blame in all of this mess is taken as read.


----------



## Farmwife

So true all around.


----------



## crohnsinct

muppet said:


> With a public option, we'd not be in this mess,.


I don't know about that.  Our friends here with public insurance seem to have a tough time getting appointments, tests, approval for treatments, few docs available etc.  Many have to buy supplemental private insurance to cover everything. 

Seems all the systems are flawed in some way.  Just sucks that some one can't figure this stuff out!


----------



## muppet

The public option in the US wouldn't have abolished private insurance, it would have competed with it on price. Given the efficiency of Medicare (whatever you've heard, Medicare and Medicaid are incredibly cost efficient and hospitals throughout the US rely on Medicare and Medicaid patient loads to stay solvent, it's an incredibly successful program), that would only be a good thing for the country.

Instead we get rising premiums and corporate protectionist bullcrap just like always.

I've been working in insurance and healthcare for 14 years. Go ahead, debate me.


----------



## muppet

What I do know is that our friends here with public insurance don't have kids in their country who post on reddit and other social media platforms asking peers how to fix their own fractured fingers, deep lacerations, Crohn's symptoms, etc, at home using popsicle sticks, duct tape, and Pepto Bismol. You should cruise reddit some time and do some searches on "can't afford a doctor" and similar phrases if you really want to be scared out of your wits by what kids only a little older than yours and mine are going through in this country right now with no insurance.


----------



## crohnsinct

Oh that option..O.K. see your point there. 

Oh and  I am not debating.  The system is flawed!  Hell add to the list of flawed systems the educational system too!  And a bunch of others but I don't want to get too depressing. 

That makes me so sad about that reddit stuff.  WTH?  Do their parents not have them on some state plan?


----------



## muppet

There are huge holes in who can be covered by those plans. People think there's a program for everyone and the ER takes up all the slack but its not true.


----------



## muppet

I just emailed Dr. B a few minutes ago explaining that I'd heard from radiology but not scheduled anything yet in case he still was considering admitting Sarah for the scopes or tube placement. I got a somewhat terse response saying that it's very difficult to admit a patient for scopes or for "elective" feeding tube, as those are outpatient procedures.

The only reason I was talking about inpatient is that he broached it last week, now his response has me feeling like a loony parent. 

I replied back that I'm certainly not eager to admit Sarah to the hospital frivolously or unnecessarily and if he strongly  feels EN is a poorly justified option for her then I'm certainly willing to try the vancomycin and clean out we discussed. 

I'm just not sure why he seems annoyed at my mention of an inpatient stay when he brought it up last week. It never would have occurred to me otherwise. I thought it was overkill.


----------



## muppet

Now I'm gonna sit and fume about this until I talk to him tomorrow morning. The admission for the scopes and possibly the tube was his idea. In the case of the scopes he's worried about her blood platelets due to ITP, and in the case of the tube he wanted her to potentially be observed overnight with it. But now he copies his staff on a response that seems to be lecturing me on the inadvisability of admitting her for these procedures..?

Maybe he's just really busy and I'm reading in a tone that's not there, but it sure seems like a terse and lecturing reply over something that HE forwarded in the first place.


----------



## Johnnysmom

Tell him off.  It will make you feel better 

Okay so you probably can't do that, but hopefully your response was enough to make your point.  

You were very clear when you mentioned it in your post after your discussion with the Dr. that you were a bit puzzled why he wanted her admitted.   So that was definitely not your imagination.  Sometimes the best Dr.'s can be a bit of an ass sometimes.


----------



## DustyKat

Good luck today muppet! and in case you would like to know what I do with the doc...I wouldn't be backward in coming forward in telling him that I don't appreciate the sassy attitude when discussing an issue that was suggested by him in the first place.  

Dusty. xxx


----------



## Sascot

How frustrating!!  Make sure when you speak to him tomorrow that you remind him it was his idea (whether you go ahead with it or not).  Maybe he was just having a bad day.  Hope things get sorted soon.


----------



## muppet

Paged Dr. B this morning and he called back within a few minutes.

He launched into a spiel right away about how difficult it is to set up EN and how it's not going to work for an acute episode, so I don't know if he was just reinforcing things, or didn't read my email reply last night in which I agreed with all of that.

I think he's a very knowledgeable and usually affable doctor, but he's straining my patience a little this week. I'm not sure if he's different, or I am. I get the impression that my litany of questions and my interest in trying potentially sub-optimal (for UC) treatments may have irked him a bit.

ANYWAY, we're going to do... ((((DRUM ROLL)))) another freaking prednisone course. He says we'll try a high dose, short duration course (I've heard this song before) and maybe this time we'll introduce the Vancomycin midway and try to speed the taper with it. 

I'm OK with this because Sarah has gotten worse (more bowel movements more frequently with more bleeding) in the last couple of days and I know that steroids are what she needs at this point anyway, based on her history. Hopefully she'll even respond to them.

Feeling a little defeated, condescended, and stressed out here.


----------



## muppet

He also said that scopes and MRI aren't pre-requisites to treatment, and we should hold off.

I agree that I don't want her to get worse, but I hate to think that we're going to quiet everything down before doing a test that will no doubt then show that everything is quiet.


----------



## izzi'smom

Sometimes I wonder if they forget entire conversations they have had with us...UGH! Good luck with Pred...hoping it works quickly and she is able to taper. We did our MRE when she WAS symptomatic....I'd rather know how the disease is at it worst, although I like to know how things are looking inside when symptoms are quiet as well.


----------



## muppet

The fun continues. Here's my last email to Dr. B:



> Hi Dr. B,
> 
> I'm sorry for so many emails.
> 
> The pharmacy called us a short while ago and told us that they can order the vancomycin, which they do not keep in stock, but that the out-of-pocket cost to us would be over $3,000. Unless this is some sort of typo in their system, this will obviously be prohibitive for us and I don't think we can pursue it, especially if it does not contribute to meeting our deductible, as prescription copays normally do not.
> 
> So, as of now it looks like I won't be filling the vanco. Just letting you know.


----------



## muppet

Found out today that the med will have a $30 copay once we reach our deductible, which we would do in a single day if we picked up this med. That's freaking CRAZY, but that's healthcare in the US I suppose. Wooo.

I was looking at my claim history and of three prescriptions I've picked up so far this year, the copays of two of them have applied to my personal and family deductibles as well as my annual coinsurance (out of pocket) limit. The third copay applied only to the out of pocket limit, but not the deductibles.

YOU figure out this health plan, I f****ing give up.


----------



## DustyKat

We may live half a world away and speak the same language but for what you have written it may as well be Martian! :yfaint:


----------



## muppet

Honestly, for all of these complications (never before did HMO/PPO plans combine coinsurance, deductibles, and copays into a single plan), the ratio of what you pay to what you get in terms of benefits has remained fairly static over the years (not counting premium hikes) That is to say, reconfiguring benefits to have ever more variables involved doesn't seem to be motivated by a desire for the insurance company to pay out less to an insured, at least not a heavy user of insurance like me. It honestly seems motivated by a desire to make the benefits as inaccessible and confusing to use as possible and scare away the casual users of insurance.

Now, I can't prove that's what they're doing, but seriously, I used to work in insurance for years, and now I'm in healthcare, and the way they're structuring plans now, at least at my employer (through a major US carrier) is frigging insane.

The 3 main mechanisms in insurance of sharing the "pain" with the insured and making him make smart choices about his utilization are copay, coinsurance, and deductible.

A copay is generally a fixed fee that the insured pays for any particular service. There's a copay for doctor visits, one for prescriptions (in the last 10 years, this has become a tiered fee depending on the cost of the drug), one for hospitalizations, etc.

Coinsurance means that you pay some percentage of each service. Traditionally, coinsurance is used for "out of network" coverage with doctors or facilities not contracted with your particular insurer and traditionally the split is 80%/20% so that the insured feels the burden of the expense and doesn't over-utilize non-contracted doctors.

Deductible means that you have some flat amount, sometimes very large, that you have to pay yourself before the insurance will pay anything. In the past, this has meant 100% coverage after deductible for contracted (in-network) providers.

What we have now, from Aetna, combines all three in one plan. We have a $3000 family deductible to meet before we receive any benefits, except for certain medications, which still have a copay, which evidently does not contribute to meeting our deductible when we pay it. We have a 10% coinsurance even on IN-NETWORK, CONTRACTED providers after meeting our deductible (this is capped at $5000, but still), and a 40% coinsurance on uncontracted doctors (double what it would have been in the 1990s, in other words). AND we have copays for all of our prescriptions that vary between $15 and $45 depending on how costly a drug is, and even then I've found there are some exceptions where the copay can go higher (and I have no idea how to explain that.)

For the average person trying to use their benefits, they just have to take the insurer's word that the plan is being administered properly. It's utterly ludicrous to combine all 3 cost control mechanisms into a single plan, doesn't actually save the insurance company much (if any) money, but probably looks good on some actuarial table somewhere and gives a couple of insurance executives an erection to think that they're using all possible methods to keep people from receiving "excessive" benefits.

It's complete insanity.


----------



## kimmidwife

Muppett,
 I totally agree with you! But I think it may even get worse with this obamacare comming up!


----------



## Johnnysmom

I think they purposely make it complicated so you will give up.  Especially if you are very ill, who has time to make sure everything is being paid correctly!?!


----------



## muppet

kimmidwife -

"Obamacare", also known as the affordable care act, mandates that insurers have to use 85 cents out of every premium dollar for payments to medical providers. That means only 15% of your premium can go to salaries, bonuses, operating expenses, etc. That's a GOOD thing.

It has also helped people like us with pre-existing conditions, who can't be turned down for insurance because we are already sick, as many of us have been in the past.

It has also given insurance "back" to millions of college aged kids who can now stay on their parents' medical plans until age 26. Many private plans already allowed this for students, but now even working youths or those without such generous plans are covered when they weren't before. This includes many Crohnies who post on reddit and had to go for years without coverage and got very sick, who are now seeing doctors thanks to this legislation.

There's a lot of misinformation out there about Obamacare, which is a shame because it stirs up opposition which allows the Republican party and their lobbyists to sabotage it as much as possible. Romney even vowed not to enforce its provisions, which would have been DISASTROUS for many people, including many on this forum.

I can't wait to see the effect of the state exchanges when they finally open next year, if the GOP doesn't manage to poison them with malicious legislation or dirty procedural tricks beforehand, or the Dems don't bow to lobbyist pressure and insert more corporate-friendly bills into the pipeline that will sideline the whole reform effort. Obama has certainly been little help, the way he seems to negotiate with an absent second party on his own programs.

If only the private option hadn't been cut out (because Obama is a big fat Right of Center poser and Congressional Dems are spineless and bought), we'd be in for some seriously overdue and sorely needed reform. As it is without the public option, we're settling for half measures and a lot of people will suffer for it, but it's VASTLY better than the situation prior to the ACA being passed.

What exactly is your objection to the ACA?


----------



## muppet

Not to mention that it's objective fact, easily provable with statistics, that the US pays several times more annually for several times LESS EFFECTIVE healthcare, overall, than other countries that have universal healthcare as a human right.

While it's true that the wealthy or well insured in this country can receive care superior to care in many of those countries, what good is that when it's only available to a single digit percentage of the population?


----------



## jmckinley

Sorry things are so crazy muppet. I can totally sympathize with you about the terse Dr. Last year when Ryan was flaring, the more questions I asked and suggestions I made, the ruder and angrier the GI got. The day we went to admit Ryan, he was yelling and turning blood red. It was all "my" fault that things weren't under control and he wanted to do this and that but I said no. Funny how they forget! I finally concluded that it was a matter of "semantics". The way I saw it was "I am going to ask a ton of questions and I expect direct responses from you, the expert, about the best action to take". He saw my questions as resistance to his plan and backed off treatment when I what I wanted him to do was answer my questions clearly and move forward if it was the best way to go. Apparently, there are lots of parents out there that don't ask questions and they get used to that. Then they don't know how to handle inquisitive parents that do research.

My son is on methotrexate. I don't know if that works for UC, but you don't have to worry about compliance because it's a shot that you give 1/week. I would want scopes for sure. I am sure you know the risk of removing colon if it is crohn's. I'd want to be sure there's no inflammation in the small intestine. And Ryan's GI always wants to see a scope when there's a flare. You'd think your Dr would want to see how bad it is when it's bad. What's the point in seeing a clear gut?

I hope you get some answers soon!


----------



## xmdmom

I'm just catching up with this thread and have a couple of comments/?s.

Izzi's mom  wrote  "Sometimes I wonder if they forget entire conversations they have had with us"   Yes they do forget!   Sometimes doctors forget their prior recommendations or entire conversations or part or all of a patient's history etc. They are busy and sometimes sleep deprived and often  multitasking.  Knowing this, it is good to start the conversation with a brief review  "In the office, you mentioned .... because of ....... now.....". 

Muppet:  You are right- it is difficult to judge tone in email.  I would use email only for conveying information and try not to assume anything about tone or feelings.    

In Sarah's case,  could the doctor have momentarily forgotten her ITP, when he seemed surprised about the inpatient scopes?

This all sounds really frustrating.  I understand you're wanting to have scopes that show something.  Did you communicate this to the doctor?  In any case, why would the MRE would need to be delayed?

I hope everything will be sorted out and Sarah will be feeling better soon.


----------



## muppet

We'll probably have at least the MRE this month. I need to call today and schedule with the GI nurse and the nutritionist about potential EN in the future. When we go in for that, I'll try to get the MRE on the same day.

I understand the docs being overworked and underslept, but that's something they ought to address, no?

I do try to prompt him usually but this was like, 2 days after our appointment and I guess I assumed he'd have a little more memory of Sarah if only because she's a tough case. I'm sure he has a few dozen tough cases, but c'mon.


----------



## Tesscorm

Wow, just trying to get caught up on all...  Muppet, so sorry you've had so many (BIG) bumps in the road lately!  :ymad:

The insurance sounds like a nightmare!!  I haven't had to deal much with the insurance - our insurance said no to the EN but then the hospital arranged for a regional agency to cover the cost.  But, am dreading what is to come with remicade?!?!?  It always seems to be complicated!  Good luck!

And sympathize with you re the conversations with the GI.  I'm so envious of those who have an open, easy relationship with the GIs.  I have that with my own GP and it makes such a huge difference when you feel comfortable questioning and voicing your opinions and worries.  As we've only met with Stephen's new GI twice, I guess time will tell... 

I hope you can arrange for the scopes SOON and commence treatment soon as well!!! :ghug:


----------



## xmdmom

I really wasn't trying to make excuses for my former colleagues.  I just wanted others to know that it is common for doctors to forget some patient history or prior conversations some times most often during phone calls or emails but also at appointments.  It can certainly be disconcerting when this happens.


----------



## muppet

Oh I'm not that upset about him forgetting details, although it does irk that it was so shortly after the discussion. I do think that some doctors have unrealistic case loads and I don't think it's always unavoidable, either.


----------



## Farmwife

I'm SO sorry muppet you have to deal with all this.:stinks:

After I took Grace for a consult to have a brace made, the secretary stated your plan renewed and you have to meet the deductible.:voodoo: Then she whispers a ball park (possible, could go higher:blush figure for the brace. Lets just say there was 3 zeros behind the number!:ywow:
I came home and thought:shifty: all he's going to do is make a glorified air-cast brace. For crying out loud I can do that too.:voodoo::voodoo:


----------



## muppet

See, when medical staff and providers have to apologize for costs and whisper estimates, the system is frigging broken. Nobody's health, nobody's bodily integrity, should depend on how much currency they have in their bank account. Society is broken when that's the case. Plain and simple. Society exists to facilitate cooperation, not as a competition. If it were the latter, why not just live like animals and drop the pretense?


----------



## kimmidwife

Muppett,
I don't want to bring up politics on the forum and I do agree with some,of the things the ACA has done. What I don't like is how it is raiding the Medicare coffers. That it is forcing a lot of doctors to see so many patients in order to stay open that they don't want to stay open and plan to close. That it has forced employers to close or pay a huge fine. I don't like the idea of rationed health care where when our child needs an MRE they might have to wait a year to get one, and other things that I don't want to get into. enough said I am dropping this subject as I said I love this forum and don't want to discuss politics on it.


----------



## muppet

I can sympathize with wanting to avoid political discussions. However, I think the ACA is an unavoidable topic on boards like this one, because it is LITERALLY a life and death issue for many members of this community. I don't think it's reasonable or acceptable at this point for anyone who suffers or whose loved ones suffer from a chronic illness to be against universal healthcare at this point. Health and well being is a human right. Universal healthcare is a proven program and a solved problem in every first world country except the US. Somehow, doctors have not gone broke. Small business continues to flourish. Retirees are not dying for lack of care, either. All of your arguments, nothing personal, are motivated by either firsthand or secondhand conservative propaganda with little or no data to back it up. In fact, every one of your arguments can be easily defeated with counterexamples in other countries that are already doing this. I'm not pointing fingers. There's so much malicious propaganda out there because of corporate and other wealthy interests, including on the "news", that we're all soaking in it on a daily basis. It's hard to know what's true unless you're extremely motivated.

While we in the US sit and have this debate that has already been resolved in every first world country but ours, people suffer unbearable pain and die because they must rely on their employers to decide their fate, if they can even find an employer with 8% (and that's the heavily massaged figure) unemployment. That's crap. I'm beyond being polite about this particular issue.

http://www.reuters.com/article/2012/06/20/us-usa-healthcare-deaths-idUSBRE85J15720120620

But, I will stress, it's nothing personal. There is an awful lot of bullcrap out there about ACA and about "socialist" healthcare in general that needs to just go away. It's time.


----------



## muppet

As to whether the ACA raids Medicare, it does not:

http://www.nashuatelegraph.com/news...itifact-is-obama-really-raiding-medicare.html

What it does is make certain payments to hospitals contingent upon performance. If a hospital is negligent and discharges a patient too early; If a patient suffers from a hospital borne infection, etc, it impacts the hospital's reimbursement. This is an incentive to take better care of vulnerable patients, not a "raid."


----------



## Clash

Blech...I hate politcal debate. I don't know about all the rhetoric on either side but I do  have experience with state sponsored/gov't sponsored healthcare and my biggest hope is that C can get through HS, college and into a job that provides private insurance.


----------



## muppet

As a long beneficiary of private insurance, who has seen his benefits shrink and premiums rise year after year; who has had to scramble to provide not only for his own care, but his tiny daughter's, after one or another layoff and subsequent loss of coverage (due to not being able to afford literally THOUSANDS in COBRA premiums immediately after losing his job); who has had to shuffle doctors with whom he or his daughter has had a great rapport and wonderful success due to network changes from changing jobs... I have to say that I can't WAIT for the day that we all have government sponsored healthcare, that is as successful and efficient as Medicare and Medicaid have already been proven to be for decades, so that my employer no longer determines my benefits or my doctors. I can't wait for the day that I no longer have to worry about changing or losing jobs because my daughter's life LITERALLY depends upon the insurance my employer deigns to allow me to have.

In my opinion, our system is feudal and immoral. I will not cry to see it go.

Ask people in the Netherlands if they'd rather switch the US system.

The annual per capita cost of healthcare in the US is more than $8,300. In Canada, France, and the UK, it's half that. And, overall, their outcomes are *better* than outcomes in the US. There's no sane argument against single payer healthcare any longer. The insurance companies and associated industries are making BILLIONS off of human suffering in the US and many of those billions are funneled into buying the news so that you'll continue to believe we're not being taken advantage of.


----------



## DustyKat

There is no doubt pros and cons for both systems and the fear we have for each others is born out of the unknown. To compare the hospital system in the US to that of other first world countries is comparing apples to oranges simply because the system outside the US revolves around the public system and the private system is there for those that wish to take that option up. The big money medicine, with very few exceptions, is the domain of the public hospitals simply because it isn't financially viable outside of that realm without crippling costs to either the consumer, the health fund or both. Of course if it falls to the health fund then it invariably falls to the consumer by the way of increased premiums. 

Nothing is for free so it is paid for through our taxes. It is embedded in our psyche that to present to a public hospital, which as i said is the essentially the system here, as a public patient and there is no cost to you from the time you enter until the time you leave. 

The levy we pay also covers the subsidised pharmaceutical scheme and subsidises  doctors services outside of the hospital system. 

My concern with the system as it exists in the US is the apparent drive up of costs. Have you all found that? 
Just from some of the conversations I have read on this forum the basic cost of services is significantly inflated. I was shocked at some of the mark ups. I guess re reading your last post muppet that observation is supported that by the per capita cost you have stated. 

I have enough worry, fear and anxiety in my life, I couldn't imagine what it must be like to have a shadow forever hanging over your head that at some point there is the potential for treatment to become unaffordable.  

Dusty. xxx


----------



## muppet

The only way that familiarity with the American healthcare system reduces fear is through habituation, not understanding. I've been immersed in it professionally for over a decade and it terrifies me to the point of insomnia.


----------



## izzi'smom

muppet said:


> See, when medical staff and providers have to apologize for costs and whisper estimates, the system is frigging broken. Nobody's health, nobody's bodily integrity, should depend on how much currency they have in their bank account. Society is broken when that's the case. Plain and simple. Society exists to facilitate cooperation, not as a competition. If it were the latter, why not just live like animals and drop the pretense?


izzis doc is afraid he s hoping to lose a couple of great nurses because they feel the . majority of their day it's spent battling insurance companies instead of providing nursing care.
it s a sad state of affairs for sure. 
and while I am not sure Obama's plan is . perfect...it's a start. we need as change and we have to start somewhere.


----------



## muppet

I'm in the ER. I got norovirus from Izzy and its tearing me up. Passing pure bile for hours which is burning my gut. Bleeding. Diaphoretia. Pretty intense gastritis.


----------



## muppet

They triaged me as "abd pain". I'm here alone


----------



## Jmrogers4

Hope you get to feeling better, :stinks: I hear it is a pretty bad one.


----------



## Farmwife

Oh muppet I hope they can give you something to help.


----------



## muppet

Well I stopped praying to die a couple hours ago but I'm in full flare and can't take my meds.


----------



## muppet

Every single person who has seen me so far has focused on the flu symptoms while I stress that I'm here for fear of crohns complication. I know the flu is moot.


----------



## jmckinley

Muppet, I hope you get some relief soon!


----------



## upsetmom

I hope you get better.


----------



## izzi'smom

UGH how awful. Hoping they are able to help you...and that you are doing better quickly, Muppet.


----------



## Johnnysmom

Muppet that pain and nausea is the worst.  I am so sorry you are going through that.  I hope they get you hydrated and comfortable and it is nothing more than a stomach bug. 
Hang in there.
(((((Hugs))))))


----------



## muppet

I'm home. They gave me two bags of saline and offered a third but I wanted to get home to my girls. They gave me solumedrol which made the gastritis better but has worn off. Solumedrol usually kicks me into steroid dependency but we'll see.

They sent me Hoke with pred and zofran. Feeling better but still pretty awful. They triaged me as a flu case clogging up their ER and when I refused morphine I got knowing looks.

Sigh.


----------



## muppet

Now Sarah says her gut is worse than yesterday on 40mg prednisone...


----------



## Sascot

Hope you feel better soon and it doesn't send you into a bad flare.


----------



## muppet

Turns out Sarah's gut may be worse today because she forgot her 6MP last night.


----------



## my little penguin

Muppet 6-mp doesn't clear the system that fast.
Hope she feels better


----------



## muppet

No, it doesn't, but she routinely forgets, so I have no idea where she's even at.

To be fair, I routinely forget, too. Almost once a week.


----------



## my little penguin

Pill boxes or wrist alarms for meds

App pillboxie has a check list to check off med and notes time taken 


https://itunes.apple.com/us/app/pillboxie/id417367089?mt=8


It keeps a history for you


----------



## izzi'smom

UGH. Knowing looks for REFUSING a drug? Ridiculous. Hoping you both are doing better quickly.


----------



## muppet

MLP - You would not believe the methods we have tried already. We're both chronically absent minded.

Angie - addicts frequently turn down narcs to stay sober/clean so I think there's an assumption that if you're OK dealing with pain rather than side effects, it's a good chance that's why.


----------



## izzi'smom

we don't see many recovering addicts here...just seekers. I certainly wouldn't judge someone refusing, unless they were refusing all aspects of treatment/testing, in which case I would wonder why they presented to the er in the first place.


----------



## upsetmom

my little penguin said:


> Pill boxes


This is what we use....sometimes she wouldn't remember whether or not she'd taken them ..this way i can just check  without asking.


----------



## DustyKat

Ugh! I am so sorry to hear of what you have been and are going through muppet.  

I hope you are able to get on top quickly and without too many consequences. :hug: Good luck! 

I also hope that Sarah is feeling better, bless her. :heart: 

Dosettes (pill boxes) here too! They are a godsend! 

Dusty. xxx


----------



## my little penguin

> On February 23, 2012 the WHO recommended that the Northern Hemisphere's 2012-2013 seasonal influenza vaccine be made from the following three vaccine viruses:
> an A/California/7/2009 (H1N1)pdm09-like virus;
> an A/Victoria/361/2011 (H3N2)-like virus;
> a B/Wisconsin/1/2010-like virus (from the B/Yamagata lineage of viruses).


From:
http://www.cdc.gov/flu/about/season/vaccine-selection.htm

So it covers strain b


----------



## muppet

Everybody in the house has a flu shot this year, and whatever this was, it wasn't in there.

So far Sarah and my wife haven't gotten it. If anyone should, Sarah should being on both 6MP and a high pred dose right now, but so far so good.


----------



## DustyKat

Fingers, toes and everything else crossed here muppet! 

Dusty. :heart:


----------



## my little penguin

Fingers crossed here as well.

Sorry About the vaccine post -- opps I thought I was in the flu shot thread .
Phone had me confused.


----------



## muppet

Izzy woke up late from her nap today and had the most frightening tantrum/freakout I've seen her have in a VERY long time. The sort of thing that makes me wonder if the autism diagnosis we scoffed at could have something to it, if only a little. I think she's fed up with 5 days of being sick and is at her wit's end. If she's not better soon I'll have to call the pediatrician and I hate to do it because he sucks.  I just haven't pulled the trigger on firing him yet because I have no strong replacement candidate.

She finally calmed down and went downstairs to cuddle with Mommy and watch TV after 10 solid minutes of screaming and crying on her bed and refusing to be touched.

Sarah was craving chicken fingers from a particular small chain takeout place we have here so when I took her to get that (sympathy spoiling), we stopped at Toys R Us and got Izzy a bucket of toy dinosaurs for a few bucks. They seem to have brightened her evening somewhat considerably, although to be fair by the time we got back she had already built a "train" out of a paper towel pack and a bunch of toy bins with Mommy.


----------



## DustyKat

I hope she is soon well on the way recovery muppet and you can avoid the docs visit. :goodluck: 

Sending loads of healing thoughts for the trying times you are all having...:ghug:

Dusty. :heart:


----------



## AZMOM

Muppet - just getting caught up...... . What an awful few days! I hope everyone is better as I type. 

Btw, pill boxes here - couldn't do without them. 

J.


----------



## jmckinley

Glad you are home and recovering. What a bum couple of days you've been having! I hope things are on the upswing soon!

Ryan has this great pill box. It has a.m. and p.m. for each day. What I love is that each day pops out, so if he spends the night out he can just take it with him!


----------



## muppet

We've got the mother of all pillboxes for Sarah. No slacking there. But no manner of alarms, alerts, or reminders mean a thing for us. "Oh, there's the pill alarm, I'll get to that next" and then 2 minutes later it's completely out of mind.


----------



## AZMOM

iPhone?  You can set a bazillion reminders. 

J.


----------



## Patricia56

I am no stranger to mystifying and destructive IRS regs/rules that also make the word obscure seem transparent.

So I did a little looking over at irs.gov and even now am scratching my head. Truthfully, I think you need to speak with an accountant who really knows about health plans and not just take your company's word on what's what.

However, I think the issue is summarized by these two IRS Bulletins that basically say you can have more than one kind of account but if you have a cafeteria plan then the FSA is treated as secondary insurance and can only be used for things your primary insurance will not cover like vision and dental coverage. The exact details are determined by the way your employer chose to set things up when they converted to a cafeteria plan I think.

*BUT*

if my reading of this stuff is right, once you have exhausted the HSA you should be able to use the FSA funds without those restrictions.

The problem with this interpretation is that you may have to meet your HDHP deductible before you can use the FSA $$. Which I assume would leave you with a doughnut hole.

There is one arcane situation in which you can transfer $$ from an HSA to an FSA but I am pretty sure you won't qualify. It is described in Pub 969 the IRS publication that covers HSAs, FSA, and such.

http://www.irs.gov/pub/irs-pdf/p969.pdf

IRS bulletin 2008-29 HSA's

http://www.irs.gov/irb/2008-29_IRB/ar11.html#d0e1355

IRS Bulletin 2005-49 this bulletin may apply if your employer is in transition on a Cafeteria plan

http://www.irs.gov/irb/2005-49_IRB/ar08.html#d0e1151


----------



## AZMOM

Patricia - you rule!


----------



## muppet

Thanks Patricia!

I got my employer to lower my FSA limit, which was SOMETHING. I can take the difference and bank it toward medical stuff, I just lose the tax deduction on it.

The part about meeting the deductible is a little ambiguous. Do they mean that you must have satisfied the deductible from the insurer's point of view, or your own point of view? By that I mean, once Aetna processes $3000 worth of claims from me, they will begin to pay benefits out. At that point, can I turn around and use the FSA to pay the $3000 worth of bills I am about to receive, or do I have to pay them before the FSA is "unlocked"? If the latter, how would they even audit that?

Anyway, it's moot as I've carved the FSA down to what I can actually use on vision and dental, and we'll have to deal with the gap (about $1000) ourselves out of pocket without a tax break. Such is life.


----------



## momoftwinboys

Agree Patricia is great  
Hope you guys r feeling better 
Muppet were u able to get company to make changes?
If I understand correctly, hsa covers all qualified med expenses including vision and dental  the plus of hsa is that it is yours and moves with u like a 401k. Also u can build balances and invest the funds once they get over a certain amount. We maxed our contribution last year which is good because there are funds in there to cover H's remicade last Monday. We hit the family deductible of our high deductible plan in the first week of the year. We will continue to fund the max... I think of it like 401k money except we get to use it in the short term rather than years from now.


----------



## Patricia56

Taking pills = last thing before bed, as climbing into bed, totally tie it to being taken at bed time if possible when it's an essential med and there's an issue with missing  it.

And missing one day is not a big deal. But you do need a significant level of compliance for it to be effective, I'd guess at least 85% or more (no one heard me say less than 100% OK?) and if her remission is fragile then obviously 100% is what's really needed.

Is there a chance that her "fragile" remission is really due to poor compliance? If so, maybe it's time for a heart to heart with her about that and an explanation of how the medication works to help her stay well.

The problem is that there's no immediate feedback to reward her for her efforts to be compliant. So you may have to come up with an external reward. You know your kid and whether it would have to be weekly, monthly whatever. Might just be a dish of ice cream together to celebrate a week well done.

Together you count the number of pills in the pill box at the end of each week - unless you think she might toss them I guess. I have a kid who would think of that although I don't think he'd actually do it since he knows he'd lose many things for many months...

Incremental approach is best if she's currently missing most of her doses. If she's only taking 2/7 then aim for 4 or 5/7 as goal for next 2 weeks. Then aim for 7/7 etc. I would keep up the monitoring if she is responsible for taking her own meds. And if she's not directly responsible she could certainly be responsible for saying "I didn't take my meds yet" when it's bedtime.

About Izzy. Of course every child is different and there are never any guarantees but...

My daughter has always hated to be touched when she was upset or angry. No hugging that girl, no siree. You will get physically repulsed even physically fought off if you try it. When she was little she had very violent tantrums on a regular basis. As an infant she hated to be touched when she was crying. She would literally turn into this rock hard screaming red-faced board in your arms. She also had sensory issues, spoke late and stuttered when she did start speaking around age 3. She was eventually diagnosed with significant language processing disabilities - as in the 1 to 3% scores OK? And finally with ADD only in the past year. Treating her ADD has helped her so much I regret not pushing for this sooner.

She is 17 now. Her 4th grade teacher told me not to expect her to graduate from HS. My girl has a 3.3 GPA and is on track to graduate early if she chooses from an academically strong small HS focused on using group process and offering both high school and college credit classes in digital design/animation. She has friends, she has a plan for going on to college, she is self-confident and often mistaken for someone much older than her 17 years.

So hang in there. It's early days with Izzy. There's no telling what the future will bring.


----------



## momoftwinboys

Oops u answered while I was writing. 
At my company, I can adjust my hsa contribution during the year thru payroll which I did when we went to remicade. I believe I also had an option to make a deposit to my hsa thru the administrator of the hsa. U may want to check on that to get the tax advantage on the other amount.


----------



## AZMOM

Muppet - I don't have HSA but do have FSA.  But yes, FSA can be used to pay deductible and co insurance. Ours is administrated by Cigna and they will reimburse off of the EOB. 

Julie


----------



## muppet

Julie - The FSA rules change if you also have an HSA, and that was my problem.  We normally use FSA and we'd become quite accustomed to it, but our high deductible plan at work changed to a high deductible with a built in HSA, which kinda screwed us up.

Patricia - We tie pills to mealtime and we probably get 87-93% compliance. ;-)

Today I forced her to drink about 3 liters of electrolyte solution over the course of an hour or two while I supervised and... HALLELUJAH, her symptoms have drastically abated. How about that? It's almost like when I tell her she's chronically dehydrated, I'm not crazy!!

Izzy's autism diagnosis is, excuse me, horses***t. She has some sort of low level brain damage from inadequately treated severe jaundice at birth, is my pet theory, but what I do know is that she's gone from a non-verbal, no-eye-contact mannequin-like little girl with very muted emotional expressions to what, as far as we can tell, is a completely and utterly normal 3 and a half year old with a mild speech impediment. I am not a neurologist or a psychiatrist, but my understanding is that kids with autism to the extent Izzy's was diagnosed over a year ago do not "recover" in the way that she has.

Despite our disbelief, she still received all the prescribed therapies (once we finally got even the autism diagnosis, because at first we were told she was absolutely normal, which was not true at all) including ABA and speech. She's in the special education preschool program in our town now, the integrated program which mixes "neurotypicals" with developmentally delayed kids, and doing quite well with just 90 minutes of speech a week and no behavioral therapy. Next year she will probably be re-enrolled as one of the role model students.


----------



## muppet

We're headed to Boston Children's for an admission. :-/


----------



## my little penguin

Hugs izzy or Sarah??


----------



## Crohn's Mom

Ugh - good luck!
Hugs!


----------



## izzi'smom

Thinking of you


----------



## Johnnysmom

Muppet

So sorry.  

((((((Hugs))))))


----------



## AZMOM

Keep us posted. Thinking of you all!


----------



## muppet

They were expecting us but what a busy ER. Waiting for a room and praying there's no novel flu virus in here...


----------



## Farmwife

Sorry muppet what did I miss? Why is your kid in the ER?

I hope it all goes well.


----------



## muppet

Just got into a room. More waiting....

Sarah hasn't responded to prednisone 40mg x 6 days. Bleeding cramping slightly dehydrated. Platelets were good last week though.


----------



## Jmrogers4

Sorry Muppet, sending lots of prayers and hugs your way.  Let us know how things are going when you can


----------



## muppet

Labs were finally drawn a half an hour ago. More waiting.


----------



## Sascot

Thinking of you, hope things get sorted soon and things get better.  Gotta love the waiting round at hospitals. :yfrown:


----------



## muppet

We're in a room. This place really seems run down and antiquated compared to CCMC. Also the rooms aren't all private which is a bummer.


----------



## muppet

Sarah trying to sleep but suddenly we're important. Not NPO surprisingly. Admitted based on reported symptoms because her labs are all fantastic except platelets.


----------



## muppet

Labs are all normal. Got IV Solumedrol after 12 hours on site. Plan is to rest bowel, do scopes and MRI tomorrow or Friday to try to figure out why she has pain. Hopefully tomorrow because after 3 days of solumedrol what are they gonna find?


----------



## muppet

Her pain is a lot better today than last night. I'm starting to wonder if we jumped the gun allowing her to be admitted. She just doesn't seem sick enough to justify a week stay to wait for procedures on Friday.

But she wasn't responding to prednisone. I dunno. I feel dumb. This is the least dramatic inpatient stay she's ever had and it feels weakly supported. Not sure what/if to do about it. Working on no sleep.


----------



## jmckinley

No, you were not wrong to go to the hospital. She is feeling better because of the Solu Medrol. My son didn't respond to prednisone either. But when I pushed the GI to admit him, they started Solu Medrol and Bam! Very quick improvement! Get those tests done and don't doubt yourself!

Thinking about you!


----------



## Patricia56

Sorry it took IV meds to help her but I am glad she feels better.

As for second guessing, it's a time honored activity when sitting in a child's hospital room while the child who, just a short while before was in agony and clearly very ill, now seems just fine. Like the car making the noise that stops when you pull into the auto repair  place.

I hope you will pardon this reality check but, the doctors are the ones really calling the shots (well the insurance company is calling the shots and the doctors are trying to make it work out right at least 50% of the time). She would not be in a bed with IV meds running if someone didn't seriously think she needed them. They would not have scheduled her for MRE, scopes, etc. unless they thought she needed them and could make a case for that to the insurance people.

So when they no longer think she should be there ---- they will tell you.

Until then, give that second guesser a rest or use it on the stock market or something productive like that.


----------



## Sascot

Nope, definately need to be there. I am sure you are not the only one in there that questions it.  I always feel like 80% of the kids in the wards I've stayed in with the kids look absolutely fine - playing in the playroom, smiling, eating, etc.  I agree with Patricia - they would not have you there if not needed - docs are great for not admitting until they have too :wink:.  You have the opportunity to get everything done, grab it with both hands - and try not to be too bored while you wait till friday.  Good luck with the tests.


----------



## crohnsinct

ABSOLUTELY!  Was just telling someone the other day how hard it is to get admitted and how they resist up a storm.  She needs to be there.  Look at how much better she got with the IV!  That shows she needed it.  Relax and enjoy the lack of drama...you have had plenty of it already.  Good Luck with the imaging. 

AND STAY AWAY FROM THE GERMS!!!!!!!


----------



## muppet

MRE was bad. She was prone and lots of pain after being still so long. She wanted to beg out before glucagon and contrast but I talked her into finishing. Scopes cancelled for now pending dxchg tomorrow.


----------



## Patricia56

Dxchg pending results of MRE is more like it.


----------



## muppet

They haven't indicated it but I'm sure its a factor. As her labs are all clean, Sarah's reported symptoms seem to be driving. I spoke with Dr B in the radiology waiting room last night. I sent him an email asking if inpatient until Friday may not be necessary. He seemed pretty receptive to rescheduling Scopes and letting us out pending her progress, which works for us. We've had our fill of admissions.


----------



## muppet

Thanks to everybody for moral support. Running on low sleep don't mean to seem ungrateful.


----------



## muppet

I asked for a printout of her labs which is apparently contraband at CHB now you're supposed to mosey over to medical records during an active admission. F that.

Despite being told she had no inflammatory markers, her CRP was 0.9 at admission down to 0.39 now.


----------



## jmckinley

I'd say that's close to an inflammatory sign especially since it went down so much with the solu medrol.


----------



## muppet

Now Dr B is back on the fence about keeping her for scopes. Seems to have waffled. He's keen to see stool but all she's passed since admission is miralax.

MRE normal small bowel normal stomach normal TI. Thickening of sigmoid and rectum.


----------



## Dexky

I hope you get out of there but I still think, after 5 years, scopes need to be done.  She's having too many ongoing issues.  You may be the greatest health advocate in the world but you don't have x-ray vision and neither do they.  Good luck Muppet!


----------



## muppet

Turns out we're only 3 years from scopes my memory just sucks.

Starting to feel pressure at work for missing like 12 days this year already. Boss hasn't said anything but he can be very passive aggressive to put it mildly.

That and Lord, but driving in Boston makes me anxious like nothing else.


----------



## muppet

And in any case scopes would be scheduled either way. There's no way we're not getting them.

With her pain and weird (not bloody, just weird) stools, having it done inpatient may be a good idea. I just worry about norovirus + scopes. Forgot to ask that question.  I also forgot to ask what changed for him since last night or if it's just a change in his leaning.

Dr. B sort of shows up, delivers the message, and you've got to be prepared when he shows up or else. It's not that he doesn't listen, it's that everything seems to be shorthand for him. He's heard it all and knows what you're gonna say and isn't interested in all the qualifiers you want to offer with your statements. He can be very flustering for me since I qualify EVERYTHING with a dozen conditionals.


----------



## Patricia56

write it out in bullet form.

then edit out half.

then edit out half again.

then maybe you will be ready for him.

then consider just handing him the piece of paper and saying Please read this first before we talk.


----------



## muppet

The GI team came this morning and my wife and I video conferenced using Sarah's laptop and my phone. Gee, technology!

Anyway, now they're discharging her today again. The GI team at CHB seems pretty disorganized to me. They're sending her home with methyl-prednisone, which I have no experience with. Seems like we could have tried that before an admission and saved a lot of time, lost work, and a huge amount of money. Sarah's health and safety obviously come first but I feel like this was an overreaction in hindsight. She was never anemic, never dehydrated. I suppose her dramatic improvement on solumedrol was something that had to be found out, so there's that.

One issue is that she reports pain differently to us vs her doctors. She was reporting terrible (10) pain to us that motivated us to page Dr. B and drive her to Boston to be admitted, but upon arrival (after a 3 hour drive in a single position) reported a 7 to the doctors there and nothing higher than a 3 since (except during her MRI when she had to lay prone for a few minutes and I think she wanted out of that machine.)

Very frustrated, not wanting to second guess my daughter's reporting of symptoms, but it's very inconsistent and seems sometimes convenient. There was at least one occasion where she told a nurse she was feeling better then immediately after the nurse left told me she felt terrible. I know the pain comes in fits and starts and spasms, believe me, first hand, but I'm doubting her a bit lately.

The GI team cited some index whose name I don't recall as evidence that she could go home. Her score went from a 75 to a 15, whatever that means. I'm sure her reported pain on the pain scale is a multiplier in their rubric.

After our HSA/FSA debacle I now have to scramble to cover the gap as we've certainly maxed our deductible with this relatively unsatisfying hospital admission.

Scopes will be scheduled within a month or so.


----------



## xmdmom

Pediatric Ulcerative Colitis Activity Index, perhaps? 
http://www.nature.com/ajg/journal/v106/n4/fig_tab/ajg2010481t1.html

http://www.nature.com/ajg/journal/v106/n4/fig_tab/ajg2010481f1.html#figure-title


----------



## muppet

Probably.

I'd have scored her at 60 at admission and probably 15 or 20 now. I guess it makes sense.

I think I'm lacking sleep more than anything. Sarah makes me a little nuts sometimes but I don't think she's being manipulative about her symptom reporting. I think she wants sympathy from mom and dad and to avoid more tests from docs, and she's a kid, so it goes.


----------



## Patricia56

Differential pain reporting is not unusual. Hard to know exactly what is behind it with her. I get the same sort of thing with my son - he minimizes his pain to his doctors quite a bit. In his case I believe it is because he has several misconceptions or ideas about getting care that interfere with his accurate reporting.

1. He doesn't want to "bother" them because he knows for a fact that there are kids who are sicker than he is and he feels uncomfortable taking his doctor's time when he's not really that sick

2. He feels embarrassed and self-conscious about having to report things to do with his gut esp. w/perianal sx and stooling and would just as soon never have to discuss this with anyone ever again. He feels slightly less uncomfortable about this with me than with the doc.

3. His hx of invasive procedures and treatments have undoubtedly left him anxious, angry about the unfairness of it all and feeling sorry for himself to some extent. So if he reports truthfully to his doctor, he probably thinks that he will end up with more tests and new treatments he doesn't really want to get and that will make him feel worse than he already does.

4. There is of course the drama effect - getting attention from us parents. But I don't think this plays that big a role in my son's case. You will have to be the judge for your daughter.

5. Parents provoke emotional responses in us that no one else does. So some of it may simply be that our kids are able to be more objective about their symptoms with their doctor than with us - or vice versa - depending on the kind of attachment they have with us and their perception of their relationship with us and our expectations for their behavior.

That was interesting to think about. I wonder how or if this will change as my son enters adulthood and has to start negotiating these waters on his own.


----------



## DustyKat

I am so sorry to hear of all you have been going through muppet...:hug:..and relieved to see that Sarah is feeling better.  

Matt developed complications whilst on Pred, aside from IV Hydrocortisone, it never really was his saviour. 

As to the pain, although I do look to numbers as a gauge I am wary of taking them at face value, far too much room for other factors to play a part. Certainly emotion is one but chronic pain can certainly paint a false picture too, not to mention how subjective a number is. 
I look to the non-verbal signs of pain and how they marry with what is said when gauging pain. These type of things:

Facial expressions: Facial grimacing, agitated facial expressions, biting her lip.

Physical Changes: Changes in respiratory and heart rate, guarding the painful area, writhing, noticeable fall in energy and enthusiasm levels. Does the pain stop her from doing anything - walking, laying down straight, sitting. 

Other Signs: Moaning and groaning, restlessness, constantly shifting position, general withdrawal symptoms, lack of interest in surroundings and change in appetite. Absentmindedly crumple fabric in her hands or toes so as to shift the stress caused by pain.

Thinking of you both. :heart:
Dusty. xxx


----------



## muppet

She's definitely got a spring in her step that was missing Monday.

We're on nearly 7 hours since she was told by GI team we're going home with no discharge order entered. This is depressingly typical.


----------



## muppet

We're home. Sarah is apoplectic because she left behind the power brick for her laptop and I've told her the replacement is too expensive right now. She called the floor and was told to speak to the first shift in the morning.

Because of our FSA/HSA screw up, the medications they prescribed for us to follow up on are several hundred bucks rather than our usual copay, which I've now got to pull out of my butt.

I'm planning on going to bed early tonight. Ugh.


----------



## jmckinley

Glad you are home. Get a good night's sleep and I hope things look much better tomorrow.


----------



## DustyKat

Thanks for the update muppet. :hug: 

I hope you are all able to get a decent nights sleep and things improve on the morrow. Good luck! 

In my thoughts. :heart:
Dusty. xxx


----------



## Patricia56

Hope you get some rest and find a certain bathroom appliance brimming with cash instead of water or any number of alternatives 

:ybiggrin::ybiggrin::ybiggrin:  :ybiggrin::ybiggrin::ybiggrin:


----------



## Crohn's Mom

Just checking in to see how things have been going since you're home 

:hug:


----------



## kimmidwife

Hi Muppett,
Sounds like you guys had a rough week! I was barely on the computer all week it was very busy so am just trying to really catch up. I hope things are settling down with everyone. Don't second guess yourself on the hospital admission. You did what you felt was right at the time. Believe me been there done that!


----------



## muppet

We're fine, just chilling out a bit and recovering from a very hectic and stressful week. Sarah got her methyl-prednisolone and it seems to be helping better than the prednisone did.


----------



## AZMOM

Glad yall are catching a breather and that she seems a bit better!

Hugs, J.


----------



## DustyKat

How are things going muppet? :hug:

Dusty. xxx


----------



## muppet

Sarah's tapering down. Scopes are scheduled for 2/15 with an office visit, GI nurse in-service on NG tubes and EN, and a nutritionist all scheduled on 2/19.

I may push the scopes back since she'll be on prednisone a month before that date and there's a little heat at work after missing so much time, and Dr. B says it's fine to push them back. I'd prefer not to EXCEPT that we're going through a slow re-org here and I'm trying not to stand out in a bad way.

Sarah seems to be feeling much better. The methyl-prednisone seems to be doing the trick and the new magnesium supplements also seem to be helping, but it's hard to isolate the effects of one or the other, obviously.


----------



## DustyKat

I hope things go okay for you at work muppet. You surely don't need that worry on top of everything else. 

Good to hear Sarah is responding well.  

Dusty. xxx


----------



## CarolinAlaska

Wow, Muppet.  Sounds like you and Sarah have had a rotten week, but glad things are starting to stabilize out.  <<Hugs!>>


----------



## Farmwife

muppet said:


> Sarah seems to be feeling much better. The methyl-prednisone seems to be doing the trick and the new magnesium supplements also seem to be helping, but it's hard to isolate the effects of one or the other, obviously.



I would imagen it's both. I had to put  Grace on magnesium a while back and it helped. I'm glad she's feeling better. :thumleft:If you push the scopes back how far would you do it?


----------



## Jmrogers4

Glad Sarah is feeling better, hope the job all works out well


----------



## Sascot

Good to hear the meds are making things better!  Hope things go alright at your work!


----------



## muppet

I just sent a message via Facebook to a woman in Michigan who I have never met or spoken to before in my life because she happens to be the mother of a boy who has been sending Sarah harrassing and demeaning messages via the internet for several weeks, maybe months. 

Ugh.


----------



## Jmrogers4

WHAT!! You go Papa Bear.  There is no reason to put up with that.  Poor Sarah how is she handling it?


----------



## Tesscorm

That's awful!  Does Sarah know this boy?  I hope his mother is responsible and deals with it!  Hope Sarah's okay!!


----------



## muppet

She laughs it off but she also continues to talk to him because he's her "internet boyfriend"'s friend. She's not terribly good at sticking up for herself, I'm afraid. I've done a bad job in that area and I need to correct it.

I debated talking to his parents for a week or two but her recent hospitalization put it over the top for me. He's been calling her an "uggo", telling her that she deserves to be sick, deserves to die, all sorts of wonderful things. Apparently he disapproves of Sarah as "girlfriend" material for his buddy Nick. She looks like a boy with her short hair, don'cha know. All sorts of stupid crap from this 13 year old mutant.


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## Jmrogers4

That is not okay, can you find out what school he is at?  You could bring it to their administrators attention if the mother doesn't take care of it. Make sure you get screen shots.


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## muppet

Tesscorm said:


> That's awful!  Does Sarah know this boy?  I hope his mother is responsible and deals with it!  Hope Sarah's okay!!


I hope so, too, because sending her links to the CT and MI statutes against Cyberharrassment and Cyberstalking seems like something I'd rather not do, nevermind calling their local PD and making it clear that the law is being broken if he doesn't stop.


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## Tesscorm

OMG, that sucks!!  As I said, I really hope his mother is responsible and sensitive to this!  But, I'm glad Sarah doesn't seem too bothered by it but you certainly don't want it to continue! :ymad:


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## CarolinAlaska

muppet said:


> I just sent a message via Facebook to a woman in Michigan who I have never met or spoken to before in my life because she happens to be the mother of a boy who has been sending Sarah harrassing and demeaning messages via the internet for several weeks, maybe months.
> 
> Ugh.


Good for you!  I hope it helps!  If that were my daughter, I'd insist that she block him from her facebook...  I'm pretty restrictive of their internet anyway.  If he's 13 though, he is probably just stupid and has no idea how harmful his actions are.  Even so, good-bye internet BF's friend!


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## crohnsinct

That's horrible!  You go papa bear!


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## Farmwife

muppet said:


> I hope so, too, because sending her links to the CT and MI statutes against Cyberharrassment and Cyberstalking seems like something I'd rather not do, nevermind calling their local PD and making it clear that the law is being broken if he doesn't stop.




He's from Michigan, eh?

Well it just so happens that our QueenGothel has a pair of vice grips...if ya know what I mean.

Say the word!


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## kimmidwife

Muppett,
You should contact his Mom and the local PD that is illegal behavior and this boy needs to be taught a lesson now! If it is not nipped in the bud he will only continue to harass if not your daughter then other people. It is not right, this makes me so mad having had a child that was bullied .


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## muppet

I want to give the mom a chance to respond. So far, she has not. I've noticed that Facebook has a new filtering mechanism for inbox messages, though, and she may never see my message.

I found a phone number on a white pages site, so I guess I'll try that next, although I really, truly hate talking on the phone. I'm just no good at it.


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## Farmwife

EASY!

Repeat this message:

Hi my name is so and so.

Your son has been sending harassing messages to my daughter (at this time read some of them).
I believe that your son is a menace to society and if pm's her any more I will see to it that he gets lock up and your family name will be run through the mud.

Short and sweet!


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## muppet

Maybe I'll write a letter:

"Dear Mutant's Mother - Your son is a little **** who ought to be hung by his toenails..."


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## xmdmom

Do you  know that this "boy" is really a boy?


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## muppet

Seems well corroborated by friend and Facebook associations. As confident as I can be of anything on the internet.


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## CarolinAlaska

Have you thought of sending him a message directly through your daughter's FB, something like, "Hi ____, you don't know me but I am Sarah's dad.  I've been reading your comments to my daughter and I don't appreciate them.   Would you please stop?  If you don't stop, I may be forced to get others involved which could become ugly for you.  Thanks for this, Muppet (or use other name if you prefer...)"


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## muppet

The messages seem to have stopped for now so I'm ignoring the fact that his mom is ignoring me (or hasn't seen my facebook messages or friend request..)

SO, Sarah has been making about 7 trips to the bathroom a day, but swears that she is not having diarrhea or constipation. I think she may be going in there to text her boyfriend, which... ew. I've told her to quit doing that. She was swearing up and down that she wasn't texting in the bathroom but then over the weekend she took a screenshot of a conversation and posted it on Facebook FROM THE BATHROOM. Umm.. duh!

So... I think she's probably fine, and just being an obnoxious teenager. No cure for that. 

The new fish we got for our big reef tank, that Izzy named Jack West, died over the weekend from a sudden infection. I think he got stressed out either by the drop in temperature outside (which caused a 1 degree drop in the tank due to draft) or because we had one very very dry night where the tank lost 3 gallons of water to evaporation, which increases the salinity a bit. Not sure. Anyway, he's dead, and Izzy didn't seem upset in the crying-her-eyes-out sense but she asked a LOT of questions like can't we just go get another Jack West at the store and I explained that we can get another Kole tang but he will not be Jack West, etc etc etc. She's still asking, which I think is what 3 year olds do.

Now two other fish in the tank are sick. I spent several hours fishing them out of the tank (they're fast and SMART) so that I could get them in a quarantine tank with medication. Hopefully I'll be able to save these ones but I have zero experience with quarantine tanks. It's very hard to maintain a saltwater fish in a 10 gallon tank without a biological/ecological cycle going in it like you would have in a large tank. 

It's always something.


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## Tink572

muppet said:


> So... I think she's probably fine, and just being an obnoxious teenager. No cure for that.


Most dreadful thing I've heard all day, says the mom of a 14-year-old and one who will be 13 in two months.  Going to be a long few years.....


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## muppet

Tink572 said:


> Most dreadful thing I've heard all day, says the mom of a 14-year-old and one who will be 13 in two months.  Going to be a long few years.....


If she/he is already 14 and the terrible transformation has not happened... you may luck out. With Sarah, it was like a lightswitch at midnight on her 13th birthday. From sweetness and light to Satan's minion on Earth. I'm still sort of dumbstruck by it.


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## Tink572

Both boys.  The 14-year-old is just starting with the attitude, maybe he won't be so bad!  He's mostly a good kid.

The other one has always been an easy, take-it-as-it-comes kind of kid--he'll probably be my nightmare teenager.


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## muppet

Sarah was an exceptionally good kid. Amazingly good.

She's still a very moral person, mostly, but now she's a bit sneaky about certain things (eating off her diet when we're not looking, illicit conversations with friends about *gasp* sex and stuff) which sometimes can just be attributed to wanting her teenage privacy and other times is definitely a touch of defiance.

The biggest issue is the constant lack of respect in communication with me and her mom, rolled eyes, exasperated sighs, basically talking to us as if we were her teenage peers. And apparently, this is how ALL of them talk to teachers now, WTF? When I was 14 if I talked to a teacher like that I'd be suspended. They do it daily?

SO... it's more TV sitcom level agita than juvie hall, which I guess is good. Still extremely exasperating at times.


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## Jmrogers4

muppet said:


> And apparently, this is how ALL of them talk to teachers now, WTF? When I was 14 if I talked to a teacher like that I'd be suspended. They do it daily?


My 14 year old nephew is currently grounded for telling his math teacher she doesn't know how to teach and he wasn't learning anything.


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## Tink572

Oh my, if I see one more eye roll, I think my eyes might pop out of MY head!  I really can't complain, though.  Both are really good boys and don't give me too much trouble. 

The lack of disrespect at school amazes me.  My kids go to a school for 7th and 8th graders.  They come home with stories every day of something someone said or did to a teacher or a fight between kids.  They both know if they did anything to get in trouble they wouldn't have to worry about school administrators, they'd have to worry about me and their dad!


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## Jmrogers4

I agree with you Tink both my boys know they would be in way more trouble at home then at school.  You treat your teachers and administrators pretty much everyone with respect whether you like them or not


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## Tink572

Jmrogers4 said:


> I agree with you Tink both my boys know they would be in way more trouble at home then at school.  You treat your teachers and administrators pretty much everyone with respect whether you like them or not


I keep telling my boys that school is just the start.  They're going to have bosses and coworkers they don't like or respect, and NOW is the time to learn to how treat people with respect no matter how they feel about them!

Of course, my boys think I'm nuts most days!!  (and I'll admit, some days I am!)


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## muppet

Jmrogers4 said:


> My 14 year old nephew is currently grounded for telling his math teacher she doesn't know how to teach and he wasn't learning anything.


Sarah stood up in her French class last year and told the teacher she was an idiot who could speak neither French nor English properly and that she was tired of being graded poorly for her poor teaching. Then she called for other classmates to also stand and support her coup.

I have to admit I giggled a little bit at the news, but she was severely reprimanded over that one.


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## Maree.

I am so glad Owen my eldest who is 14 this month has so far shown no interest in getting a facebook account.  

At my kids school they are told if they have an issue or a complaint that they should schedule a 3 way meeting with teacher & the parent to discuss.  There is then an escalation process if parent & child aren't satisfied.   I think if your 14 and you have a maths teacher who doesn't know how to teach and your not learning anything, this is an issue that does need to be raised with the teacher and potentially the school.  However kids do need to understand that there are appropriate ways to express their concerns and grievances.


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## Jmrogers4

Yes Maree, I believe he was grounded for lack of respect and they are addressing math concerns because as of now his older sister is teaching him each lesson
Muppet - well at least they have no problem speaking their mind sometimes it is just how they go about, you do have to admire them somewhat though.  Honestly I giggled too when I heard as I wish I would have stood up and told my 8th grade math teacher he was an idot, maybe I wouldn't be so lost when it comes to algebra these days.


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## Tesscorm

I'm hoping we're nearing the end of this stage with 18 (boy) and 19 (girl) year olds, however, the rolling eyes, sarcasm and entitlement are still a part of our reality!  :lol:  Husband was doing some renovation work on Sunday at 11am, directly beneath my daughter's bedroom, and she yells down 'OMG, this is my only day to sleep in.  Pul-leeeease do that later!'  Ummm, she only has classes on Mon, Tues and Thurs!!!  :ymad: Husband told her 'too bad, come help me if you can't sleep'! :ytongue:


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## muppet

Our scope is scheduled on Friday, I hope that Boston has done a better job clearing snow than Hartford because if I have to navigate unfamiliar, complex highways (with tolls, to boot) that are half-closed by snow drifts, I may go insane.

Sarah's brooding and angsty teenagerness has really been coming to a head lately. She's grounded from the internet after sneaking off to a site she's really not even supposed to be on in the first place while doing her homework the other night, then lying about it, and since she hasn't got a screen to act like a turnip in front of, she's taking it out on everyone in the house.

I wish I knew where my sweet girl went. All I have is this surly, entitled, nearly intolerable monster 80% of the time who only wants to stare blankly at her laptop, phone, or television and ignore and be ignored. Chores? Forget it.


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## Tesscorm

Remember the 'terrible twos' and all the 'no', 'no', 'no's and the sweet girl who emerged??.... This too shall pass


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## Crohn's Mom

Hey Muppet, Gab is about to turn 20 in a couple of weeks, and "that sweet little girl" is finally rearing her head again! :ack: (hope I didn't just jinx it!) 

Hang in there ~ it may get worse before it gets better, but it does indeed get better. Hormones are a B&$#h!


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## Maree.

Please tell me that having only sons means I'm safe and I won't have to endure the surely, entitled, monster stage.  Please ... (Willing to accept half truths and out and out lies here)


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## muppet

LOL@Maree.

Sarah never really had terrible twos. It seemed lucky at the time.

Then she had terrible twelves instead. It was bizarre. I'm talking out and out, dropping to the floor kicking and screaming tantrums at twelve years old. Luckily, that has mostly stopped, but the surliness is getting almost unbearable. Ugh.


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## Jmrogers4

Sorry Maree, I have 2 boys one 13.5 and one that will be 12 in just a couple of months.  Not as bad as teenage girls but I think their brains start to leak out of their head.  My son who could remember every minute detail of something you told him 6 months ago, now can't remember something said 5 minutes ago. And they know everything too.  Everything is "I Know!"  They don't think even though they "know" everything anytime they have done something "stupid" which is more and more frequent, the inevitable question of "What were you thinking?" is answered by a blank look and "I don't know" (the only time they don't know it )
Muppet - Hope scopes go well and enjoy that 20% of the time for the next several years, I'm right there with you.  They may survive teenage years but I don't know if I will. :ybiggrin:


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## Maree.

My eldest one is 14 in 13 days,  he's 6 ft 3 now and is my solid dependable one.  there doesn't seem to be a lot of little boy left there anymore, but I'm yet to see the difficult teen.  I keep hoping he just skipped over that bit.


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## Henrietta78

"All I have is this surly, entitled, nearly intolerable monster 80% of the time who only wants to stare blankly at her laptop, phone, or television and ignore and be ignored. Chores? Forget it"

Ha! Sounds like my 4 YO son right now!  rounding the corner towards 5 though, and starting to see some changes for the better...I heard 5 is a good age!


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## Maree.

5 is wonderful   Still adorable but just that little bit more independant.


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## CarolinAlaska

5 was "I want to do everything my older sisters are doing" and "brush my teeth, pick out my clothes, tuck me in" and essentially still treat me like a baby...


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## crohnsinct

Scopes Friday?!  When are you doing prep?  Where are you doing prep? At home?  Yikes!  The thought of driving O 1 1/2 hours away the morning of a scope makes me nervous I could only imagine driving all the way to Boston. Take a road with lots of rest stops. 

Good Luck!


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## Tesscorm

Good luck with the prep and scopes!!!


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## muppet

There are lots of places to stop on the turnpike and before. It's the most mild prep I've ever seen. I wish prep had been this easy when I was 6...

I wouldn't even dream of letting CCMC do this scope. I'll take the drive.

We have to get a CBC today to check her platelet levels. She's on the methylprednisone, so they should be fine.


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## Jmrogers4

Good luck with scopes hope CBC comes back with good results


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## my little penguin

Good luck !!!!


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## muppet

Scopes totally clean except for slight inflammation in rectum. I think 3.5 weeks of methylprednisolone may have had a bit to do with that, but Dr. B feels that it's probably not a dramatic difference. I do recall scopes previously showing activity in the entire colon, but that's not the case right now.

So.. that's good... except we don't really have a picture of where she was at when admitted (even though Dr. B seems to think it's close.)

He talked about treating her with enemas and I reminded him that she's ASA intolerant so it'd have to be steroid enemas. Will  talk on Tuesday. I'd like to get her off of 6MP because she's getting a cold every 3-5 weeks and Izzy catches every single one. 15 colds for both of them (Izzy suffers far more than Sarah each time) in the past 13 months.


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## Dexky

Yeah, it's the answer you hope for but really no answer at all!  Hope you and Dr. B get her figured out Muppet!


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## Sascot

That's good that the scopes were clean for the most part. Good luck with the appointment on Monday!


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## muppet

Well, yesterday's appointments went awfully, except that Sarah is doing very well. Some incredible lack of professionalism, some poor treatment from Dr. B when I asked about whether 6MP could be responsible for Sarah getting a cold every 3 weeks all year long regardless of season. Our in-service with the GI nurse was cancelled, apparently, but nobody told us OR the front office staff, in fact they consented us for it when we arrived, so we waited in the waiting room for an hour for absolutely no reason and then we went home because I was too angry to sit and wait for the nutritionist whose visit was moot without the NG tube in-service anyway.

I would tend to agree that given Sarah's fantastic scope and general good health on methyl-prednisolone, and the reinforcement of her UC diagnosis, the issue of EN is pretty much moot right now, but since we haven't gotten the biopsies back yet I wasn't going to cancel, there's no harm in being prepared if they find a granuloma or something, I figured.

Well apparently the nurse and/or Dr. B decided the in-service on NG tube feeding was no longer necessary without bothering to tell anyone else. Either that or they decided that day that we didn't need it and went with "Oh, we cancelled that, didn't we tell you?"

Pretty aggravated. Like I said, they consented us for the in-service and nutritionist. Consent to bill, I mean. We had 3 papers to sign for each of the 3 appointments.

Add to that Dr. B's continued habit of not letting me ever get to the period in any of my sentences, and a shade of condescension and incredulity that I'd even consider taking her off the 6MP (I wasn't, I was asking if it could be responsible for her colds) when she's doing so well. Then telling me (not in so many words) that I'm *crazy* for wanting to discontinue one of Sarah's medications to keep the *baby* from getting sick... ugh. I was not happy. I wasn't being vague. I was quite clear, but Dr. B likes his shorthand, doesn't let you finish a sentence because he knows where you're going with it. Well he was anticipating me badly yesterday. 

I'm super pissed today, which is making me feel ill. Ugh.


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## muppet

So of course the upshot is that Sarah is doing very well. Still on a reasonably high dose of pred, though, at 16mg of methyl-prednisolone.


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## Maree.

Glad to hear she is doing well.  Sorry that your doctor has such shocking manners.


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## crohnsinct

That is ridiculous...it's not like you live around the corner and came by on your lunch hour!  UGH! I mean I get mistakes happen but then they should apologize up one side and down the other.  

I can take pretty much anything but a doc not listening to me just about takes the cake in my book!  

Sorry you are having a time of it but glad Sarah is doing well.


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## Sascot

Yikes, that was very annoying for you. Don't blame you for being angry! Thank goodness Sarah is feeling ok otherwise it would have been twice as bad


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## CarolinAlaska

I'm sorry it went so terribly.  I know how it is when someone thinks you are saying or meaning something that you aren't...  I'm always afraid of suggesting or asking about something for the reason that they might think I am pushing for that thing instead of just wanting to discuss the options...  I hope you are feeling more at peace now.  <<<Hugs>>>


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## muppet

crohnsinct said:


> That is ridiculous...it's not like you live around the corner and came by on your lunch hour!  UGH! I mean I get mistakes happen but then they should apologize up one side and down the other.
> 
> I can take pretty much anything but a doc not listening to me just about takes the cake in my book!
> 
> Sorry you are having a time of it but glad Sarah is doing well.


Given who your doctor is I had trouble not choking on my lunch while reading that one sentence... 

Thanks for the well wishes in any case.


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## crohnsinct

LMAO!  I thought you would appreciate that! 

But really, keep in mind my experience with his personality has not been anything like yours...Of course we both figure I am seeing him post stroke and personality transplant!


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