Posted By Posting
Jan 25, 2009
chezzie8
First child Ellie with EGID and reflux doing well at nearly three on Nalcrom and Zyrtek. Son 5 months awaiting colonoscopy and endoscopy next week.
Need your help on eosinophilic symptoms?
Hi everyone, I am new here, and I've been looking for others with babies with EGID to say if you think what my little boy is going through are symptoms of eosinophilic colitis, EGID? My first daughter was diagnosed at 1 years old at Great Ormond Street London, basically we had been through the worst of it then, but with the elimination diet (she was already on neocate) that helped a lot. She still refluxes at 3, and gets a distended tummy but we have learnt to cope with it. Now we have a son, for the first few weeks he was ok, relfuxing, but ok. Then he started screaming, and I mean screaming (not crying, blood curdling screaming!) all the time everywhere we go. He has got better as he is older at 5 months and can be distracted, but still screams a lot. Reflux meds don't do anything. Before xmas we saw a GI Dr at GOSH again, and he put him on steroids and nalcrom and zyrtek as he thought the same problem. Thing is they didnt really helped. What he seems to do is have spasms, and this is what I want to ask if any of you ladies think this is familiar. He lies asleep, then grunts, and throws his whole body in the air. When he is bad, this happens twice a mintute. This means he sleeps soooo badly, day and night. We are so sleep deprieved its unbelievable. The Dr said he is having spasms in his bowel. Does anyone elses child have these? The seem much worse at night, and even though on neocate we know mediations upset him too, so he is off all of them now awaiting endoscopy and colonsocopy next week on the 3rd. We are so tired, I just want this done now. Does anyone elses kids have these spasms? I am not 100% sure if its his bowel or reflux? Any feedback would be most appreciated, Cheryl x
Jan 25, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds

I dont to have much time to elaborate right now as my son is having an awful day today and needs his mommy. My name is Jessica and my 2 and a half year old son Brent has EGID,among many other health problems. Nice to meet you!!Brent has frequent jerking,crying,severe trouble sleeping due to his EGID, but he also has lots of other issues, it is hard to know what causes what lol

There are medications to treat bowel spasms/cramping, aome examples are Levsin and Bentyl are common for treating this.... my 6 year old daughter takes Bentyl for spasms, she has severe GERD, SIBO,and motility disorder,etc...Brent takes medication that treats spasms as part of the effect,poor motility,also treats high tone, he takes a high dose of muscle relaxer, baclofen, twice daily every day but it isnt a normal med prescribed to treat this because of side effects, his motility issues are severe.HTH

What reflux meds have you tried?

Jan 25, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Hi, my DD was diagnosed with EC, and we are still trying to find a med/diet solution.

What I know for us is:

Neocate makes her colitis flare up, which mkes her reflux flare up too, so sometimes you just don't know what is what.....protein, fat an sugar all cause horrible flare up as well, which cause her to arch and scream, even if she was in a deep sleep. We've cut out all of these foods and still sometimes have to give her maalox for a bit of relief.

Spasm only happen to her during her flare ups...which happend all the time until I made this huge diet change. I wish I could help more, but if you have any questions for me, please feel free to ask.

Brenda

Jan 26, 2009
chezzie8
First child Ellie with EGID and reflux doing well at nearly three on Nalcrom and Zyrtek. Son 5 months awaiting colonoscopy and endoscopy next week.
Thanks for your replies. Sorry Jessica your having a bad day your poor little boy is really going through it isnt he,don't think anyone has any idea how hard this is, I am really struggling at the moment, tears every day! and thats just me. Nice to meet you too. Our Gi Dr said after this colonoscopy (he wants to properly diagnose IBD) he will put him on a drug they use for crohn's here in the UK. He said once the inflammation is gone the spasms will stop, his spasms were a little better after he had the steroids I must admit, but he is worse then ever at the moment. At the moment everything I give him, including calpol upsets him. His GI also said this is because of the inflammation. I give him lansoprazole which worse great, helps him sleep during the day when he will normally only have 30 min naps, but on the lansoprazole 2 hours! But, the second day of being on it, his tummy gets worse and the diarrhea starts leaving a nasty red bottom and foul smelling poo (sorry). So, he can't stay on anything at the moment, he is off everything, I am giving him a couple of ml's of zantac a day, which cuts down some of the night wakings but really does not do the job. His spasms last night were crazy though, they wake him constantly, leaving him crying. I'm hoping when he is on these anti inflammtories he will be able to handle the lansoprazole. My daughter could, and she slept so better. Thank you again, I really need some feedback at the moment, I don't know where I am. Brenda , interesting you say neocate flares it up. My GI said because it is so fatty it stay in the tummy longer causing reflux. I remember when my kids were breastfed they never refluxed half as my as they do on the neocate. But I know there isn't anthing else. It's strange he is on nothing but neocate, yet still his symptoms are not going. I am beginning to think its something environmental as well, maybe the cat or something. Thanks again, tonight I am going to film his spasms to show the Dr's next week. Cherylx
Jan 26, 2009
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
My daughter has spasms as you describe. She also deals with a tremendous amount of pain on a daily basis. Nights are the absolute worst. I think this is because of the laying down, and the fact that during the day the brain gives pain low priority. At night, the brain gives pain very high priority.

We just had our colonoscopy/endoscopy this past Friday and what was visible to the eye in the colon is not good. The docs. say her colon is friable, that as soon as they touched it, she started bleeding everywhere. They also said there are little indentions in the colon and they don't know why or what caused it.

We are still waiting for biopsy results. We probably won't know till next monday earliest.

I hope you find answers and soon. I am sending hugs your way and nice thoughts. I know the feeling of long, sleepless nights. Not sure if it would work for you, but writing, and art help me through the days. I try to think of 10 good things everytime a negative thought pops in my head.

Jan 26, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
Interesting that my son couldnt do neocate either, he was allergis to it. He is doing better on Elecare.
Check with your
doctor first!