Success Stories

[tichard]

I would like to hear about any success stories (long term remission) with children using any of the listed therapies-Helminthic Therapy (Worm Therapy) and if so what type of works, Whip, Hook, TSO Pig? Fecal Transplants if so, method used and how often, Map Therapy, if so antibiotics, which ones, dosage and how long? My nine year old son was diagnosed in April of 2012 and I want to consider other options rather than long term remicade. Thanks for any advise.

 

[my little penguin]

Sorry but you probably won't find those as long term therapy results in children.
Since all of the above are still experimental so Therefore would not be tried in children.
Also since they are experimental you will not know what side effects they may have in adults for some time let alone growing children .

Remicade has only been used in kids for a relatively short period of time compared to other children's meds.
It is scary and in theory is for life although few at least on this parents forum have been able to keep their child on it for very long( probably due to a child's changing immune system unlike adults).
The older the child is when it is started the better for being able to stay on the med.

Obviously you are not comfortable with remicade
No ever really is until you see it work.
Have you tried all the lower meds( 6-mp Imuran methotrexate 5-Asa's)
?
Also have you tried exclusive enteral nutrition ?
That is drug free and helps kids.
Have you gotten a second opinion?
That helps - we had 3.
Where is your child's disease located?

 

[Clash]

Also there are some kids on the forum that are using LDN you might want to look into it. I think there have been two studies relating to CD and ldn and one of them was a pediatric study. My son is 16 and I have researched LDN but decided to wait and see if larger studies come out with favorable results and safety. If, when C turns 18 he wants to try it then I will support him. I think the parents here that have chosen have done so because in the studies it proved to have little or no side effects. It is sometimes difficult to find GI's to px but it has been done.

I agree with MLP as the treatments you mention are experimental and still mainly being trialed you probably won't find many children that have tried them as treatments. Good luck I hope you find a treatment you are comfortable with.

 

[tichard]

We have seen two Pediatric GI's one in Greenville, SC and the other in Atlanta, GA. My son was diagnosed in April of 2012 and as stupid as it sounds I do not really know where his Crohn's or how severe. He was in the hospital for over six days and the we proceeded with Remicade. Here is his story and I am attempting send his labs and pictures of his scope. If they do not come through I can send regular email

Colin’s Story
My nine year old son was diagnosed with Crohns’ in April 2012. He has had three flares. As you can imagine I am very depressed and concerned over my son’s diagnosis. Here is a recap of our story.
Until April 2011 I had a very healthy nine year old son named Colin who plays soccer, hockey and loves water and snow sports .
He has only had three flares however that is enough for a lifetime and know how harmful prednisone can be.

04/2011- First flare. Lasted about one week. Went to local pediatrician( Sand hills Pediatrics, Tye Whitaker). Blood and stool tests came back normal. I convinced the doctor to prescribe an antibiotic (sorry cannot remember the type of antibiotic however I can call the office if necessary) so we could go on our planned Disney Trip. I was convinced it was a parasite that was not showing up. We foster rescue dogs on an a regular babes.
He missed an entire week of school however we made it to Disney and had a great time. Tye recommend we get in with a Pediatric GI Specialist so we would be in the network if this ever happened again.

06/21/2011- We had our first initial meeting with Dr. Markowitz located in Greenville, SC who advise if Colin experienced any additional bloody diarrhea and cramping he would need to scoped.

03/29/2012 One year later almost to the week when pollen is very bad in South Carolina Colin had another flare. Two days later was scoped (Upper and lower) by Dr. Markowitz and was diagnosed with Crohn’s and Eosinophilic esophagitis. He put him on prednisone, Apriso, Probiotic and we made our annually trip to Disney. He cleared in about a week and was weaned off of prednisone within four weeks.

04/05/12 – Colin was given as a pill cam test at Dr. Markowitz’s and every came back clear.

09/09/12- Colin started having diarrhea and very painful cramping on Sunday evening. At 4:30AM in the morning I gave him a Hyoscyamine Sulf. 0.125 to help with the pain. It did not seem to help. Called his pediatric GI Office (Dr. Markowitz’s) first thing Monday morning and they requested blood work and a stool sample. He experienced severe cramping and diarrhea all day Monday. On Tuesday (09/1112) Dr. Markowitz’s nurse called and said his Sed Rates and CRP levels were normal and did show inflammation. I will attached these blood work results. They thought it might be a viral infection and advised me to go to my regular pediatrician in Columbia, Ty Whitaker of Sandhills Pediatrics to make sure he was not dehydrated. They also advised to put him on a clear liquid diet. We are due to receive the stool sample results in a few days. He started throwing up on Monday along with the bloody diarrhea. The throw up appears to be a yellowish mucus. My regular pediatrician in Columbia (Tye Whitaker) recommend and administered an IV. He said he seemed a little dehydrated however not to bad. While in the doctor’s office Colin managed to throw up and have diarrhea. Tye Whitaker advised if we would put money on it he would think it was a Crohn’s flare and not a viral infection even through Sed Rates and CRP appeared normal.
09/12/12 – Colin has not improved and the GI Nurse called and advised the stool came back with C-Diff positive. They put him on Metronidazole 250mg (Flagl).

09/16/12 He did not seem to improve and the pain was intermittent however very severe when he was using the restroom which now was every 5-6 hours. We took to the local Children’s Hospital (Palmetto Health) who ran more blood and fecal tests. As you can see from the attachment his inflammation level increased however The C Difficile Toxin B Gene by PCR Test was negative. They put him on Vancomycin HCL 250mg.

09/17/12- We finally were able to talk to our Pedetric GI Doctor after eight very painful days and he thought he had caught C-diff and that had turned into a Crohn’s Flare. The very strange thing is Colin was very healthy until eight days ago, not on antibiotics, no hospital or nursing home visits and religiously on VSL3 Probiotics. SO why did he catch C-Diff? He has lost 8lbs in two weeks.

10/04/12 – 10/10/12- Admitted to Greenville Children’s hospital. Throwing up, diarrheahia and severe cramping. We reluctantly started Remicade on October 6th. He had his second remicade treatment on 10/06/12.

10/26/12- He is having solid stool and no blood however still having cramping and a very low energy level. This is his eighth week out of school


Current Medications-
Apriso 0.375,3 Capsules per day
Singular 5mg Daily
VSL #3 -2 Capsules per day
Claritin 10 mg. 1 Tablet per day
Shaklee Children’s multi vitamin
Gummy Vitamin D
As of 09/17/12 Predisone 10MG 4 a day and will decrease hopefully after the first week. (He has only been on prednisone one other time.
As of 09/16/12- Vancomycn HCL 250MG
:sign0085:
Allergies
Penicillin

 

[tichard]

When was your son diagnosed? How long has he been ?Remicade? How many flares has he had? Has he ever had C-dff? Been hospitalized?

Also there are some kids on the forum that are using LDN you might want to look into it. I think there have been two studies relating to CD and ldn and one of them was a pediatric study. My son is 16 and I have researched LDN but decided to wait and see if larger studies come out with favorable results and safety. If, when C turns 18 he wants to try it then I will support him. I think the parents here that have chosen have done so because in the studies it proved to have little or no side effects. It is sometimes difficult to find GI's to px but it has been done.

I agree with MLP as the treatments you mention are experimental and still mainly being trialed you probably won't find many children that have tried them as treatments. Good luck I hope you find a treatment you are comfortable with.

 

[Clash]

So sorry to hear of all your little one has gone through. It is such a scary, helpless feeling when you can't take away your child's pain.

I'm not sure if you can attach labs yet it seems you have to have posted at least ten posts but that could be just with url links. I was wondering and may have just missed it in your post but who as the Dr you saw in Atlanta? We travel to ATL from middle Georgia to my son's GI.

I'm sure there will be many parents by soon with their advice and experiences. We are relatively new as my son was diagnosed the beginning of this year and he is now on remicade and methotrexate. We had to utilize remicade right away due to the severity of his inflammation and he did fantastic during the loading doses but we recently had to add the MTX to give the remicade a hand.

I believe kids with CD are more susceptible to c-diff but someone correct me if I'm wrong.

 

[tichard]

You are right Crohn's and all IBD patients are more prone to C-DIff and it is known to come back so I am praying it does not. We saw doctor Benjamin Gold in Atlanta(Children's Center for Digestive Health Care) on advise of Dr. William Chamberlain who supports the MAP theory out of Billings, MT. Our primary Pediatric GI is Dr. Jonathon Markowtiz out of Greenville, SC.
Dr. Gold will do the anitbiotic treatment to treat map however he has done it three times and it did not work and may have even made the crohn's worse . If we go the map therapy route I will probably be flying from Columbia, SC to Billings, Mt to see Dr. Chamberlain. We are looking into everything from worm therapy, Map Therapy, Stem Cell, Fecal Transplant. You name it I have checked into it. The hard part is making the decision to move forth. Our son recently spent six nights in Greenville Hospital and has received two Remicade Treatments.

 

[Clash]

Dr. Gold is in the GI group that my son's GI is in. It is interesting that Dr. Gold has tried the MAP therapy, since there is such a division between beliefs about this. I think that's great to know this group does think outside the box of accepted treatments on the pyramid of CD meds. I really hope you are able to find relief for your son soon.

 

[Clash]

There are a few members here that have done stem cell therapy and you can find their blog under the sub forum treatments. There was a girl that had the stem cell treatment in ATL at CHOA or Emory several years back she was under 18 but I do believe this was with her on stem velss and not a siblings which they think is a better choice. I haven't been able to find any updated info on her but I am hopeful about this option as well!


Edit: the stem cell blogs are by Mr. Ziggy and efeedee I believe and they were both in the trial in Chicago under Dr. Bert.

 

[tichard]

He did not promote the MAP therapy and only would do it due to Dr. Chamberlain referring me to him. I do not believe he buys into it. The THREE treatments he did for map therapy failed. I would go to Dr. Chamberlain in Billings, MT if I go that route. Dr. Gold did mention they will starting a trial on Fecal Transplants for C-Diff however you have to test positive three times within a six month period. They also have done stem cell via bone barrow there I believe two time for extreme patients out of other options.

 

[Clash]

I edited my above post to include stem cell therapy treatment members here on the forum.

Kiny, has posted a lot of information on Map and Map therapy and is real knowledgeable about all that is being studied dealing with MAP. He has mentioned the antibiotics and the issues they have run into in treating MAP. You may want to search for MAP in our search bar and go through his articles.

 

[my little penguin]

So Sorry he has been so sick. I could understand it since they did not have him on any maintenance meds from April on only rescue ( pred)

One other thing to consider.
Since he has EoE/ EGE/ EC-EGID
that can mimic a crohn's flare.
how are they treating that part?
I do know of another child with both ( EoE and Colitis).
HE has to be on an elemental only diet ( neocate formula- amino acid based formula).

Most treat EoE by removing top eight allergens and rescope ( 75% clear on this), formula only diet and/or swallowed flovent.
The key is finding your triggers.
Severe stomach pain, diarrhea and vomiting can be EGID based
One of the best centers in the country for EoE is CCHMC run by Dr. Putnam.
HIs colleague of many years moved down to FLorida ( Dr. Fanciosi)set to open up his own clinic soon that may be closer.
http://www.nemours.org/content/nemo...cal/gastroenterology.html?location=nchorlando

Here is the link to afped:

Symptoms of EGID?
What are the Symptoms of EOE?
Symptoms vary from one individual to the next and may differ depending on age. Vomiting may occur more commonly in young children and difficulty swallowing in older individuals. SYMPTOMS MAY VARY GIVEN THE DEVELOPMENTAL ABILITY AND COMMUNICATION SKILLS OF THE AGE GROUP AFFECTED. It is not unusual for it to take several visits to the physician before eosinophilic esophagitis is diagnosed. Some symptoms are common to all age groups.

Common symptoms include:
Reflux that does not respond to usual therapy (medicines which stop acid production in the stomach) – infant, child, adult
Dysphagia (difficulty swallowing) child, adult
Food impactions (food gets stuck in the esophagus) older children, adult
Nausea and Vomiting – infant, child, adult
Failure to thrive (poor growth, malnutrition, or weight loss) and poor appetite – infant, child, rarely adult
Abdominal or chest pain –child, adult
Feeding refusal/intolerance or poor appetite – infant, child
Difficulty sleeping due to chest or abdominal pain, reflux, and/or nausea – infant, child, adult
What are the Symptoms of EGID?
Symptoms may vary considerably, depending on the area affected.

Symptoms include:
Nausea or Vomiting
Diarrhea
Failure to thrive (poor growth or weight loss)
Abdominal or chest pain
Reflux that does not respond to usual therapy (which includes proton pump inhibitors, a medicine which stops acid production)
Dysphagia (Difficulty swallowing)
Food impactions (food gets stuck in the throat)
Gastroparesis (Delayed emptying of the stomach)
Anorexia (poor appetite)
Bloating
Anemia
Blood in the stool
Malnutrition
Difficulty sleeping

from:

http://apfed.org/drupal/drupal/symptoms_of_EGIDs


ANd the primer on EoE from KFA

Eosinophilic (ee oh sin oh fill ick) disorders occur when the body reacts to trigger(s) by creating too many white blood cells (eosinophils) which hang out in inappropriate places creating trouble. White blood cells target germs and other invaders; in eos kids, they recognize normally harmless things as *enemies*.

This has been referred to as "The Mother of All Food Allergies". Kids with eos disorders may or may not also have IgE allergies, but the reality is that their bodies react inappropriately to triggers, which frequently include food(s).

This is a disorder which must be diagnosed by a good pediatric GI. It must be diagnosed via biopsy. It is NOT possible to rule in or out with a blood, urine, or poop test, or by waving a magic wand.

Symptoms include any of the following; only ONE is necessary to justify testing. Vomiting, diarrhea, abdominal pain (which the child may not recognize - a child who grows up in pain assumes it is normal), FTT, GERD/reflux. Eos kids also frequently have eczema, asthma, and multi-FAs (diagnosed or not - eos kids may test negative to everything).

Solid medical info at www.apfed.org and www.cincinnatichildrens.org (click Services, then E for eosinophil).

From:
http://community.kidswithfoodallergies.org/displayForumTopic/content/3682717251713964


Link for elecare and neocate

http://www.abbottstore.com/elecare+reg/elecare-jr-vanilla-141-oz-can-case-of-6/invt/56585/

https://www.neocate.com/shop/c-9-neocate-junior.aspx




Until you get both diseases under control I think it would be hard for a doc to figure out which is which and EoE is rare.

wishing you the best of luck

 

[tichard]

He started with a positive C-diff infection that went into a crohns flare. Our doctor in Greenville specializes in EE and did not mention this being EE. He needed morphing in the Hosp. In fact he said do not worry about he EE right now because the steroids will kill the Eosinofilics.

 

[my little penguin]

The steroids cause the eosinophils to decrease but if he his still eating his triggers ( which he would be if you hadn't cut anything out then essentially after 3 days to 3 weeks he could have the symptoms listed over again from the EoE and flare.
Please read the papers because pred does not eliminate his EoE . He will always have it and unless he removes all his triggers and will continue to flare. Swallowed steroids such as flovent can be used with eliminating food in some kids but the minute you stop the symptoms come back. For others swallowed steroids are not enough.
There is also environmental factor to EoE where children flare during their worst pollen season even on safe foods.
It can take six to eight weeks for the Gi tract to heal when a trigger food is removed.
Most kids end up adding one to three foods between scopes while on formula until they have enough safe foods to create a reasonable diet.

I would call fl for a second opinion since they are close.

 

[my little penguin]

To clarify I wasn't saying this particular cd flare was egid related but if that disease is not under control as well then it complicates things .

 

[tichard]

Thank you and I will. Check into it

 

[tichard]

Understand and thank you so much!!!

 

[mvond5]

http://www.breakingtheviciouscycle.info/knowledge_base/detail/yoghurt-how-to-make-with-yoghurtmaker/

Above is the recipe for 24 hour homemade yogurt. My son was diagnosed back 2/29/2011 and his SED rate 4 and his last blood test on 3/5/13 the SED rate was 2. I would be happy to provide any of his results on his blood work to help out. Just let me know which one you would like to know.
Matthew only did prednisone while we were deciding what treatment we wanted to go with. We choose the SCD diet which is a lot of work, but we feel that this has allowed Matthew to be a healthy young man. He lost to 114 pounds before the diet and by March 2013 he weighed 145. Matthew played travel Ice hockey and used a lot of energy that we feel he received his energy from the great protein diet. He did not like the yogurt (above) so back in May we decided to allow him to stop using it and replaced it with the VCL#3 in the powder form. As time went by he started getting the D back and was going the bathroom several times again. Matthew has never gotten off the SCD diet but was able to add the Cape Cod Chips that only have the potato, oil, salt. He takes 2 to 3 cups of yogurt each day and noticed within 3 days that everything has gone back to normal.
Well because as a mom....you always want the best for your child and you want them to live a normal life. We have looked into the worm therapy and Matthew just took his first treatment on 7/25/13 and has not had any problems or improvements. We want Matthew to be able to go to a friends house and not have to worry about what kind of seasonings they use or if they have purchased quality chicken, etc.
Matthew's GI doctor is Dr. Cohen and he's the one that told us about the SCD diet because they are doing a study