GI or Rhemu complaints

[Megs_Mom]

Hi - I am wondering if anyone else has Rheumatology and/or GI concerns? Meg has tested positive for PANDAS, but also has GI issues (ulcers) and a high ANA (1:1280, speckled). Has anyone else had an ANA test done? If so, can you tell me about it, even if it was fine? I am interested in whether there is something different or additional here - or if this is something that a lot of you see. I am also interested in any GI complaints your child may have, and whether they have had testing done.

 

We will be doing additional testing over the next month, and am looking for patterns. Thanks so much! Susan (Meg's Mom)

[EAMom]

Our ANA was negative.

 

I believe Worried Dad's son had a positive ANA.

[dee45]

Hi,

we had that drawn last week should have results today or tomorrow I will let you know as soon as i get them.

 

Deanna

[ShaesMom]

Hi Susan,

 

Shae goes in next Monday for an Endoscope & Colonoscopy. She has had chronic constipation for almost four years and some other issues. I finally got her GI doctor on board to look further now that she has been dx'd with the immune deficiency disease. The GI doc tried to tell us for years that it was a behavioral thing and we just needed to repotty train her. Baloney! No seven year old wants to have accidents in their pants. Also, at age 7 she still only weighs 40 pounds and has not really gained much weight in the last couple of years so the she is now concerned about her "failure to thrive".

 

I asked her Immunologist about the ANA test and he said we would draw for it next time she comes in for a check up. So, I think that is in October.

 

Sam

[Megs_Mom]

Hi Sam - That sounds very typical & very frustrating. I am sorry you have had that reaction in the past. It's amazing how difficult it is to advocate for our kids. Once we, as parents, start to find some proof, then it gets easier - but still very frustrating. It sounds like we are on a very similar path - I'd love to trade emails with you sometime.

 

Meg just turned 8 and is 54 lbs. She is at 25%. At age 7, she weighted 46 lbs. She is very small in build. We usually don't worry to much about this, although in reality, we are a very tall family, and it looks like she is on track to be much smaller.

 

We'll do the immunilogical bloodwork this month, and then are hoping for a consult to decide if we need to redo the rheumo blood work for lupus as well.

 

Some other tests that have been suggested to us by her neurologist, in addition to ANA, are 1. Sedementation rate and 2. g-reactive proteins - both of which check for general inflamation.

 

Both our neurologist and gi doc were quite emphatic that ulcers are not caused by stress. They listed H. Pylori (negative), nsaids (we don't use), and autoimmune disorders. So maybe due to PANDAS, maybe an additional autoimmune condition. It's a complicated puzzle lately.

 

Hi Susan,

 

Shae goes in next Monday for an Endoscope & Colonoscopy. She has had chronic constipation for almost four years and some other issues. I finally got her GI doctor on board to look further now that she has been dx'd with the immune deficiency disease. The GI doc tried to tell us for years that it was a behavioral thing and we just needed to repotty train her. Baloney! No seven year old wants to have accidents in their pants. Also, at age 7 she still only weighs 40 pounds and has not really gained much weight in the last couple of years so the she is now concerned about her "failure to thrive".

 

I asked her Immunologist about the ANA test and he said we would draw for it next time she comes in for a check up. So, I think that is in October.

 

Sam

[dee45]

Hi,

just a small correction its c-reactive protein not g. just wanted to make sure you had the right one.

 

Deanna

[dcmom]

Just wanted to add a little...

 

Julia, pandas daughter, has also been chronically constipated since maybe birth. Our doctors were always more interested in treating the symptoms, rather than finding the cause. We went to a DAN dr at the end of the summer, and will be doing a stool test shortly. We are also scheduling for immune testing soon. Looking for answers as to if there are some underlying causes to pandas. She has always been a fairly healthy kid. She, too, is small about 37 lbs at age 6 in first grade.

 

Her sister has had chronic stomach aches (and anxiety surrounding them) since she had strep in Feb. Soon, may do some testing on her (to hopefully rule out milder pandas).

[Megs_Mom]

Whoops, thanks! Bad enough when I can't type regular words!

 

Hi,

just a small correction its c-reactive protein not g. just wanted to make sure you had the right one.

 

Deanna

[ShaesMom]

Hi Sam - That sounds very typical & very frustrating. I am sorry you have had that reaction in the past. It's amazing how difficult it is to advocate for our kids. Once we, as parents, start to find some proof, then it gets easier - but still very frustrating. It sounds like we are on a very similar path - I'd love to trade emails with you sometime.

 

Meg just turned 8 and is 54 lbs. She is at 25%. At age 7, she weighted 46 lbs. She is very small in build. We usually don't worry to much about this, although in reality, we are a very tall family, and it looks like she is on track to be much smaller.

 

We'll do the immunilogical bloodwork this month, and then are hoping for a consult to decide if we need to redo the rheumo blood work for lupus as well.

 

Some other tests that have been suggested to us by her neurologist, in addition to ANA, are 1. Sedementation rate and 2. g-reactive proteins - both of which check for general inflamation.

 

Both our neurologist and gi doc were quite emphatic that ulcers are not caused by stress. They listed H. Pylori (negative), nsaids (we don't use), and autoimmune disorders. So maybe due to PANDAS, maybe an additional autoimmune condition. It's a complicated puzzle lately.

 

Hi Susan,

 

Shae goes in next Monday for an Endoscope & Colonoscopy. She has had chronic constipation for almost four years and some other issues. I finally got her GI doctor on board to look further now that she has been dx'd with the immune deficiency disease. The GI doc tried to tell us for years that it was a behavioral thing and we just needed to repotty train her. Baloney! No seven year old wants to have accidents in their pants. Also, at age 7 she still only weighs 40 pounds and has not really gained much weight in the last couple of years so the she is now concerned about her "failure to thrive".

 

I asked her Immunologist about the ANA test and he said we would draw for it next time she comes in for a check up. So, I think that is in October.

 

Sam

 

 

Shae has had the Sed rate done several times and it always comes back in the normal range. The Rheumy ordered the CRP in May and it was also normal. I was surprised that the GI doc did request a stool sample. Maybe they can see everything from the biopsy??

 

When Shae was born she only weighed 5 lbs 15 ounces full term with a normal, healthy pregnancy (no I didn't smoke either). We just assumed at the time that she was small because of her food allergy (she was dx'd at 3 weeks). I became very ill everytime I ate dairy when I was pregnant. So, I don't ever remember her actually being on the percentile grid-she was always below.

 

Do you know what the name of the test is for Lupus? I am wondering if she was ever tested for it. I was dx'd with Fibromyalgia a year ago and I don't know if they ever tested me for it either.

 

Sam

[Megs_Mom]

Hi Sam - If the ANA level is high, then they suspect Lupus, but you can have a false positive. Then you go to a Rheumatologist to have a number of other tests run. I'll be happy to fax or email you a copy of the ones our daughter had run last year - I should have those by next week (just asked for this for my records). It was a huge test batch, and I don't look forward to repeating. Like most autoimmune disorders, it's a clinical picture, but the testing adds confirmation. I don't feel that Meg has most of the clinical signs, such as rash, joint pain, tired, etc. However, some docs do feel that OCD or Neuro issues are the first sign in kids. So I guess they are using the testing to eliminate the Lupus. Apparantly, I should have done this testing while she was in a flare, so we have now missed that window again. Honestly, I think Meg is much more classically PANDAS, and so does Dr. L, but the question, once raised, doesn't go away. Susan

[familyof4]

My PANDAS son has celiac's disease, pancreatic insufficiency, and cyclical vomitting syndrome (CVS). He has had numerous endoscopies and other G.I. tests done. Because he has both pancreatic insufficiency and CVS it is likely that he has a mitochondrial disorder and is being treated as such med wise. He has had these issues from birth. We didn't have our first PANDAS outbreak until pre-school (probably first strep exposure). I am sure having one autoimmune disorder probably leaves you more vulnerable to others. Additionally, because he does not produce digestive enzymes and must take percritption ones, we know that he is not absorbing nutrients like a normal person would. Several vitamins are key to healthy brain function. Since we increased his iron, vitamin d, and added a B complex he has been better. That being said I noticed some PANDAS behaviors surfacing last week and sure enough Saturday he came down with a bad cold.

 

We have celiac's disease on both sides of our families but the funny thing is no one was diagnosed until after both of my kids were.

 

Heather

[EAMom]

Heather,

I noticed that you mentioned cyclical vomiting. A parent at my dd's school has a special needs child (not-pandas, but is deaf, delayed, feeds through gi tube) who has cyclicalvomiting (which they think was associated with migraines) . She took her dd to numerous specialists, finally going to Chicago (from northern ca). It turns out he put her on amitryptiline and that has helped immensely.