A is 12 - Update!

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DanceMom

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Feb 17, 2013
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I can't believe A is 12! She's funny, competitive, hard working, talented, artistic, and beautiful. I love that girl!

We had her Hematology appointment a few weeks ago and I've been very discouraged. He wants to "watch and wait" which is what we keep hearing. He tested for CMV and Mono and she's negative for both. Trying to be patient...she's dealing okay. Her lymph nodes are getting larger...so we wait.

She's only grown 5 cm and gained .3 kg in the last year. She's no longer on the growth chart for weight. I'm not happy about that, but again, no doctors seem alarmed. "Her labs are okay. She's just small."

Her diet is going well and she does seem to feel better. Hopefully her gut is healing and her IgG will become more stable. Another wait and see....

Competition season starts in 3 weeks and she's ready. She looks frail but says she feels strong. She will do well, no doubt.
 
Happy Birthday A
:birthday2:

I hate that "just supposed to be small" phrase. They said that about Jack and once we got him on the right treatment well apparently he wasn't meant to be small unless you consider 6 foot tall small.

Good luck at competitions!
 
Happy Birthday A :birthday2:!!! I hope she has a wonderful year!
 
A had another reaction at her infusion today, even with Tylenol, and IV Solu-Cortef and Benadryl. The doctor thinks it's because her body is working too hard to fight a virus and it becomes overwhelmed during the infusion process. Her recommendation was to increase dosage or bump infusions to every 3 weeks. We'll see what insurance approves.

A is mildly Neutropenic but her IgG came up some. Hoping for a peaceful month.
 
A had her labs/infusion today. I'm happy to say that I think her low fat diet is working! Her IgG is 1130, the highest it has ever been! A few other things were a little off, but nothing too concerning. So happy right now!
 
Yes, UTI's can cause protein in the urine. Hope she feels better quick. I had a UTI last month for the first time in years a and couldn't believe how painful it was.
 
Today was a difficult day. A's first IV didn't get a good return, and somehow she pulled her second IV out in her sleep leaking blood, saline, and ridiculously expensive medicine everywhere for 30+ minutes. The way she was sitting in the recliner her arm wasn't visible so we didn't notice until she woke for vitals. Also frustrating that her IgG went from 1130-944 despite sticking to her diet. Now I'm afraid the diet may not be working like I'd hoped. Regardless, we're going to try slowly spacing out her infusions and seeing what her body will do. All other labs looked pretty good. Liver numbers continue to be elevated so this must be her new normal. Just discouraged.
 
A has complained of nausea and stomach pain for almost a week. She vomited two consecutive days, but only twice the first day and once the next. Stools are normal. Her stomach pain has increased and is now left sided.

Yesterday I called the Immunology office, but I'm always directed to whichever Fellow is on-call. She knows A, but didn't seem to give two flips about my concerns and diagnosed a virus over the phone. Not satisfied, I took her to Urgent Care and she has another UTI. Labs looked great and the infection was considered minor. 3 doses of antibiotic and she doesn't feel any better. Any suggestions or ideas?
 
Did you call the immunologist back to update them with the dx of UTI
Given she has immunodeficiency
And is not immunosuppressed like Crohns kids (over active immune system) the advice would differ
They would probably have a better idea on the type of abx strength and when to expect symptoms to get better especially vs urgent care with normal kids strength
Abx


Can your ped help you communicate with the immunologist ???

When you say not better
Do you mean she has UTI symptoms or more vomiting /feeling awful tired symptoms ...
Since abx may fix the UTI but may not fix the other stuff
 
I would ask to speak to the immunologist directly. You may not be able to do that after hours, but she should be able to call you back tomorrow.

Poor A :(.
 
Unfortunately the Immunologist does not take or return phone calls. It's ridiculous, I know. She's a fabulous doctor but the office protocol sucks. I called to inform them of the last UTI and was told to have the Pedi handle basic infections. I chose Urgent Care because in my experience they've been more thorough and efficient than the Pedi. My frustration with doctors is at an all time high.

A never really had typical UTI symptoms. I only asked the doctor to order the test to rule it out since she's had UTIs in the past. She has left sided stomach pain and nausea (which is getting worse) and I'm worried we're missing something. I suppose it could be disease progression but her labs were fine. Frustrating.
 
I would ask your pediatrician to call the immunologist. Sometimes that works better...

It seems like a crazy policy to not take or return phone calls - I'll admit, I've never heard of a doctor who does that. Can you reach her by email? She is the one treating A's main problem, so I would guess she should weigh in on anything that involves her immune system

No wonder you are frustrated!!
 
Maya142 said:
I would ask your pediatrician to call the immunologist. Sometimes that works better...

It seems like a crazy policy to not take or return phone calls - I'll admit, I've never heard of a doctor who does that. Can you reach her by email? She is the one treating A's main problem, so I would guess she should weigh in on anything that involves her immune system

No wonder you are frustrated!!
Click to expand...

The problem is that no one is really treating A's main problem - the lymphangiectasia. The Immunologist provides a bandaid with IVIG, but the medication she recommended for the lymphangiectasia was rejected by both GIs we've seen. We're only treating it with diet at this time and I thought her symptoms had improved, but now I'm questioning that. Hard to get a doctor to care when CBC and CMP look good though. And our Pedi has never been interested in coordinating her care. I've struggled with that on my own for the past 8 years.
 
Are they sure the UTI has not caused a kidney infection? Low grade UTI can have no symptoms at least for my daughter.

We did a twelve month course antibiotics due to UTIs
 
A is feeling much better now. We may never know exactly what caused her symptoms, but hopefully they don't return. I reached out to the local GI (haven't seen him for a year) and he said he'd be happy to monitor/treat her. I feel relieved.
 
That really stinks about the immunologist. That really upsets me. WTH is wrong with these doctors. I am glad the GI is stepping in.
 
We saw our GI this afternoon, the one we haven't seen in a year. I'm so glad we went! He brought in an Interventional Radiologist that has treated quite a few patients with Intestinal Lymphangiectasia. Both doctors think that A's Intestinal Lymphangiectasia is secondary to immune dysregulation. The IR doctor took one look at her swelling and lumps and said it was inflammation and part of an auto-immune process. She's severely underweight (I'm glad someone finally cares!) so we're starting Periactin to stimulate her appetite and increasing fat/protein since they don't think the gut is really the problem. We will continue to avoid fried foods and other foods high in fat because I have seen some benefit to the diet. We're also going to do a steroid burst and consider Tacrolimus in the future. I just wanted to update because I'm very relieved and hopeful that maybe we're closer to getting her better. If anyone has thoughts to share about Tacrolimus I'd love to hear.
 
We have no experience with Tacromilus, but just wanted to say I'm so glad you have a doctor that is helping!!

Hope the steroids work like magic - maybe they will help her appetite too ;)!
 
I think izzi'smom's daughter was on Tacromilus for a while. If you search, you may be able to find some threads from a couple years ago.
 
Periactin worked for great for Grace.
I know it doesn't work for everyone but we had to stop it because it was making her a crazy food kid. Lol
 
Farmwife said:
Periactin worked for great for Grace.
I know it doesn't work for everyone but we had to stop it because it was making her a crazy food kid. Lol
Click to expand...

We've done Periactin before. It helped her gain a pound or two. I just noticed her paperwork says "malnutrition". Kinda hurts to see it in print.
 
Has she tried drinking formula? I'm sure you've done Boost/Pediasure, but what about something like Peptamen? It might be easier for her to tolerate and she could put some weight on.

Alternatively, you might want to think about a tube. I know it's not ideal, but it can really help.

My kiddo lost a LOT of weight before her GI finally insisted on a tube. She was so against it till she realized how much better she felt when she got enough calories. She gained nearly 30 lbs and is a much happier, more energetic kid.

She was so severely malnourished that she developed an Refeeding syndrome and an arrhythmia...I had never realized how serious malnutrition was and I wish we had done something earlier instead of letting it get to that point.
 
Maya142 said:
Has she tried drinking formula? I'm sure you've done Boost/Pediasure, but what about something like Peptamen? It might be easier for her to tolerate and she could put some weight on.

Alternatively, you might want to think about a tube. I know it's not ideal, but it can really help.

My kiddo lost a LOT of weight before her GI finally insisted on a tube. She was so against it till she realized how much better she felt when she got enough calories. She gained nearly 30 lbs and is a much happier, more energetic kid.

She was so severely malnourished that she developed an Refeeding syndrome and an arrhythmia...I had never realized how serious malnutrition was and I wish we had done something earlier instead of letting it get to that point.
Click to expand...

We discussed formulas briefly. The issue is compliance. We've tried Boost Breeze and a few shake type drinks in the past and she won't drink them. It was a constant battle and bribery/consequences only made the situation worse. A tube would be a last resort and she's not completely opposed. She just won't drink it. We're hoping the Periactin helps.
 
If she won't drink anything
Then you and the doctors need to have "that" discussion with her
Malnourished isn't simply underweight or tiny
The docs basically told Ds
Either you drink x amount in x amount of time or you get an ng tube
Period
He decided despite the poor horrid taste of elemental formula he would drink it
He wanted to avoid a tube
That was a year ago
He is currently een again and has been for the past 6 weeks


Not getting proper nutrition is not an option
This isn't about picking out an outfit
The docs need to explain to her very clearing
Malnutrition can lead to organ damage and failure
As Maya142 stated even the heart
It's not about taste or liking or disliking
Kids can be strong willed and that is great
But not when it affects their health

You can also get a psychologist to talk with her about why it's important

From your posts low weight seems to be an ongoing issue and not just a new issue
 
my little penguin said:
If she won't drink anything
Then you and the doctors need to have "that" discussion with her
Malnourished isn't simply underweight or tiny
The docs basically told Ds
Either you drink x amount in x amount of time or you get an ng tube
Period
He decided despite the poor horrid taste of elemental formula he would drink it
He wanted to avoid a tube
That was a year ago
He is currently een again and has been for the past 6 weeks


Not getting proper nutrition is not an option
This isn't about picking out an outfit
The docs need to explain to her very clearing
Malnutrition can lead to organ damage and failure
As Maya142 stated even the heart
It's not about taste or liking or disliking
Kids can be strong willed and that is great
But not when it affects their health

You can also get a psychologist to talk with her about why it's important

From your posts low weight seems to be an ongoing issue and not just a new issue
Click to expand...

We've had "that talk". We've bribed her. We've enforced consequences when she wouldn't drink it. If those things worked for your son....fabulous. But they didn't work with A. She gagged, vomited, and worked herself up over every single one we tried. If her doctor proposed a tube we'd probably go that route. But we're trying Periactin first.
 
DanceMom said:
She gagged, vomited, and worked herself up over every single one we tried. If her doctor proposed a tube we'd probably go that route. But we're trying Periactin first.
Click to expand...

My daughter just couldn't drink the formulas, either. She hated the idea of an NG tube, but--like Maya's daughter--she ended up finding it much easier than drinking formula. And she was amazed at how much better she felt within a few days of starting the tube feeding; she had forgotten what it felt like to have normal levels of energy.

Anyway, with luck you won't need it, but if the Periactin isn't enough, keep the tube in mind.
 
I think the big difference on why it worked
Ds was inpatient
No solid food allowed per docs
They give him
water
And formula
That's it
He had been npo for days
And he saw the kids inpatient on the floor with tubes
So very different then being at home with food choices
 
Fingers crossed the Periactin works.

My kiddo was VERY strong-willed too. It helped that her GI was the one doing the insisting and I wasn't. I doubt she would have listened, if I was the only one talking to her.

She resisted the tube for a LONG time, especially the NJ tube since she had to keep it in and couldn't insert it by herself. But at some point, her GI told her what would happen if she kept losing weight - her organs could shut down. That shocked M - I don't think she had realized weight loss can be so serious.

After that, she agreed to the NJ tube and then as we started feeds, she developed Refeeding syndrome. Refeeding syndrome was first discovered with Holocaust concentration camp victims, so you can imagine how malnourished she was :eek:.

Her electrolytes were all over the place and that caused the arrhythmia (which can be fatal, which is why they monitor so carefully). It took 6 months of potassium and phosphate supplements before things got back to normal.

I promise I'm not trying to terrify you - just telling you what I wish I had known a couple years ago. I really had no idea how serious being malnourished was.

It's even worse with growing kids since they need nutrients for growth and development.

Anyway, keep a tube in mind. It might even be worth asking your GI to move things along (if she doesn't gain on Periactin).

Feeding Tube Awareness has lots of great resources, including videos of kids inserting their own NG tubes.

A is tough - I bet she'd learn to do insert it quickly AND I bet she'd enjoy showing her friends her party trick ;).
 
Thanks for the information. Neither of us are opposed to a tube. I just think our doctor wants to try this first. We're also going to slowly increase fat because he thinks the diet is too restrictive and is causing more harm than good. It's difficult when doctors don't agree and you're left deciding which recommendations to follow. I have to update him next week so we'll just take it one day at a time for now.
 
I am sorry she is having such a rough time. We are going through the same issue with weight and Caitlyn just had a G tube placed two weeks ago. It hasn't been so couple of rough days in the beginning but it is better now. She hasn't gained weight yet but the doctors are happy she hasn't lost anymore and we are taking Day by day.
 
Took A to the ER this morning for relentless diarrhea/vomiting. Labs looked good except WBC and ALT/AST were high. She's now on Flagyl as well. I just want my baby better.
 
Really sorry to hear she is struggling so much. Hope they can get her feeling better soon.
 
A is feeling much better! Flagyl just works so well for her! She had her infusion today and has gained 3 lbs in the last 2 weeks. Very happy with that! She took a little time off dance and all headaches/stomachaches are gone. We're waiting on insurance to get an ultrasound of the inflammation on her ribs. Hopefully that will provide answers and not more questions. She's been in pain with them since September. Just happy things are turning around! Oh, and IgG is down to 871 so that's a bummer. Could be from her GI flare, or because we've increased her fat intake. Or maybe it's just a blip. Fingers crossed next month is better!
 
Bizarre new symptom....

Immediately after eating, even a tiny amount, A becomes very bloated. She normally has a very flat stomach with very defined abs, but after she eats she looks pregnant. No pain. No excessive gas. Not constipated. Bloating goes away after a few hours.

Any ideas what's causing this?
 
It's common with Gastroparesis. Does she have any nausea after eating?
 
Hmmm...is it with all foods or specific kinds of food? Food with a lot of fiber (such as veggies for example) can cause bloating even in people with normal gastric emptying...

Is she on any new meds? Some antibiotics can also cause bloating.
 
Seems to be all food. A few bites and her stomach just starts expanding. It's bizarre. She's been on Flagyl a few weeks. Periactin too. This bloating started a few days ago. Excessive bruising too (platelets are low normal). She has a bruise the size of a baseball on her calf with no known cause. It takes up almost her whole calf.
 
I'd check with your GI. I wonder if it could be this:

Small bowel bacterial overgrowth

Small bowel bacterial overgrowth is a condition in which very large numbers of bacteria grow in the small intestine.

Causes
Most of the time, the small intestine does not have a high number of bacteria. Excess bacteria in the small intestine may use up the nutrients needed by the body. As a result, a person may become malnourished.

The breakdown of nutrients by the excess bacteria can also damage the lining of the small intestine. This can make it even harder for the body to absorb nutrients.

Conditions that can lead to overgrowth of bacteria in the small intestine include:

Complications of diseases or surgery that create pouches or blockages in the small intestine. Crohn disease is one of these conditions.
Diseases that lead to movement problems in the small bowel, such as diabetes and scleroderma.
Immunodeficiency such as AIDS or immunoglobulin deficiency.
Short bowel syndrome caused by surgical removal of the small intestine.
Small bowel diverticulosis, in which small sacs occur in the inner lining of the intestine. These sacs allow too many bacteria to grow. These sacs are much more common in the large bowel.
Surgical procedures that create a loop of small intestine where excess bacteria can grow. An example is a Billroth II type of stomach removal (gastrectomy).
Some cases of irritable bowel syndrome (IBS).

Symptoms

The most common symptoms are:

Abdominal fullness
Abdominal pain and cramps
Bloating
Diarrhea (usually watery)
Gassiness

Other symptoms may include:

Fatty stool
Weight loss
Click to expand...
 
Ditto to what Kim said. The bloating sounds familiar to over growth.
Specially with antibiotics that she uses.
Is her calf, Erthema Nodosum . Grace had one fill a large area. Basically, it was a bunch of small ones the popped up together.
 
Quick update....

A has gained 10 lbs this month! We're cutting the Periactin to every other day. Unfortunately the EN have flared again and she has another UTI. Third one this year. UTIs always start a downward spiral. We leave for vacation tomorrow and her recital is next week...so prayers and positive thoughts appreciated!
 
Way to go A for gaining weight!!

Really hope she starts feeling better soon. UTIs are awful!
 
DanceMom said:
Quick update....

A has gained 10 lbs this month! We're cutting the Periactin to every other day. Unfortunately the EN have flared again and she has another UTI. Third one this year. UTIs always start a downward spiral. We leave for vacation tomorrow and her recital is next week...so prayers and positive thoughts appreciated!
Click to expand...

Sure. Hope you enjoy an uneventful vacation.
 
A is maintaining her weight very well. She looks great, very healthy. We saw the Immunologist today and will probably try Cellcept instead of Tacrolimus. Anyone used Cellcept? I'm a little concerned it may affect her liver. ALT and AST go up just slightly every month. ALT is 35 (10-30) and AST is 52 (10-30). I know they're practically normal now, but she couldn't tolerate 6mp. We'll see.
 
We have talked about it but not used it. It's used a lot in Lupus and it can be very tough on the liver. It can also be hard on the stomach.

But we do know one or two kids with Lupus that it has helped a LOT.

But Tacromilus is worse in the long-term - really hard on the kidneys, I believe. It's used a lot in transplant patients. It's occasionally also used for IBD, in very refractory cases.

Just wondering - if A has an immune deficiency, why would they use something like Cellcept?
 
Maya142 said:
We have talked about it but not used it. It's used a lot in Lupus and it can be very tough on the liver. It can also be hard on the stomach.

But we do know one or two kids with Lupus that it has helped a LOT.

But Tacromilus is worse in the long-term - really hard on the kidneys, I believe. It's used a lot in transplant patients. It's occasionally also used for IBD, in very refractory cases.

Just wondering - if A has an immune deficiency, why would they use something like Cellcept?
Click to expand...

To be honest, she's complicated, and her GI and Immunologist can't quite agree on a treatment plan. She is deficient in IgG and often WBC, but she also has some autoimmune things going on like chronic erythema nodosum. The Immunologist believes that's what is attacking her rib cage and it's extremely painful for her. The GI believes Tacrolimus would help but would prefer sending her to a pain clinic to help her learn to live with the pain. I think that's cruel and want to prevent the stupid lumps from occurring. The Immunologist thinks Cellcept is a safe choice. She wants to treat the lymphangiectasia with Octreotide because she thinks it's affecting her absorption and overall well being. The GI thinks the lymphangiectasia is minimal and doesn't need to be treated. He's a little more wait and see....she's more like fix it before it becomes a huge problem. I just want her happy and pain free. :(
 
Have you looked at auto inflammatory for the EN?
Skin stuff can be fixed by kineret
Including EN
Painful shots
But is used a lot in periodic fevers syndromes
Which involves many area including GI
Not hard on the liver at all

Used for sepsis so good for immune


It has been a miracle for ds sweets syndrome (same family of disease as EN )

Might be worth asking
Stelera would be the other one used a lot for skin issues and GI
 
my little penguin said:
Have you looked at auto inflammatory for the EN?
Skin stuff can be fixed by kineret
Including EN
Painful shots
But is used a lot in periodic fevers syndromes
Which involves many area including GI
Not hard on the liver at all

Used for sepsis so good for immune


It has been a miracle for ds sweets syndrome (same family of disease as EN )

Might be worth asking
Stelera would be the other one used a lot for skin issues and GI
Click to expand...

I don't think the lumps on her ribs would be considered a "skin issue". They're under the skin, so don't look like your typical discolored EN. She also has malabsorption and mild GI inflammation we're hoping the Cellcept will treat. Both doctors agree it's an immune dysregulation issue. It's more than just a rash. It has to do with energy levels, nutrition, etc. I'm on board with the Cellcept.
 
I understand it's more than just a rash
Sweets is systemic
And so is pediodic fever they are immune dysregulation at its finest
Affecting all areas of the body
Not just the skin
I was trying to explain that systemic side of it may respond to kineret
Since IL -1 helps immune dysregulation

Most kids on it have GI skin joint
Lung kidney liver eye ear etc...
Issues as well as fatigue
Nausea

Sweets is systemic and unfortunately not just a rash
Symptoms are like the flu x1000 per Ds

Which is why I mentioned kineret
Since it took years for the docs to
Try it on Ds
 
I realize you made a drug choice
Just letting you know what else is out there
Since we tried many many drugs to try and stop it
 
Worth a try!! I hope it will help!! A pain clinic isn't a bad idea to help her cope with the pain, but I agree, they should DEFINITELY treat it.

I hope Cellcept goes well :ghug:.
 
2 doses in on the Cellcept! Due to her dose it had to be liquid. Initially she was disappointed, but says it actually doesn't taste too bad. I believe her dose is a moderate one given her weight, so I think we'll know whether it's going to work in a few months. She's excited that she's exempt from her 7th grade immunizations! lol
 
My brother didn't have to get the shots either in school.
Lol he use to brag and I would be so jealous. Lol

I hope the meds works for A.
 
Good luck!! Glad it's going well so far :).

Is she not allowed any vaccines at all or just specific ones? We weren't told about that when we discussed Cellcept, but maybe my daughter would have taken a lower dose. She had already had the flu shot that year...
 
Maya142 said:
Good luck!! Glad it's going well so far :).

Is she not allowed any vaccines at all or just specific ones? We weren't told about that when we discussed Cellcept, but maybe my daughter would have taken a lower dose. She had already had the flu shot that year...
Click to expand...

On Cellcept she will be considered "immune suppressed", so definitely no live vaccines. But vaccines are basically pointless for her anyway because her system can't continue to produce the antibodies. She's considered a "non-responder". The IVIG she gets should protect her, as long as donors are immunized. She relies 100% on herd immunity. She still gets the flu shot but we have no idea if she actually responds. Our guess is that it protects her for about 2 months.
 
Fwiw none of the 7th grade shots are "live " vaccines so for kids with Crohns who are immunosuppressed due to mtx /imuran or biologics they can easily get all of their immunization including 7th grade -just not live ones like chicken pox

Since she doesn't respond regardless of drugs -I could see why they would skip them

Hope the meds work
 
my little penguin said:
Fwiw none of the 7th grade shots are "live " vaccines so for kids with Crohns who are immunosuppressed due to mtx /imuran or biologics they can easily get all of their immunization including 7th grade -just not live ones like chicken pox

Since she doesn't respond regardless of drugs -I could see why they would skip them

Hope the meds work
Click to expand...

Thanks...but being immune suppressed with an immune deficiency is probably a tad different than being immune suppressed with Crohn's. I'm aware that the Tdap is not live...I was responding to Maya's question regarding what vaccines she can have.
 
Almost a month on Cellcept and A is doing well! She spent some time at Camp Boggy Creek and has felt great. She's maintaining her weight without Periactin and her liver numbers have actually gone down! Her body definitely seems happier on Cellcept. Praying things stay peaceful!
 
A continues to do well. She still has an inflammatory lump on her rib but she doesn't complain about it much.

She did have some side effects after her last infusion - severe stomach pains, diarrhea, vomiting, nausea, and headache. It was pretty rough for a few days. She's been asked to trial a new IVIG medication, Prometic, as part of a research study. I definitely think it's time for a switch.
 

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