GI appointment

[Debbie1]

I took my non-PANDAS son for a GI appointment yesterday. I know it is hard to keep everyone's story's straight so here's a reminder -

 

He has had ongoing stomach aches which began with a strep infection in 2008, elevated strep titers which have not come down into the normal range, elevated eosinophils, and moving joint pain which began 6 weeks ago. Endoscopy and ultrasound done several months ago were normal. All other bloodwork was normal. Rheumatologist ruled any any rhuem. disorders. He is the most emotional and anxious of my children, but overall happy, well adjusted, social, etc. No tics or OCD.

 

The GI ordered additional bloodwork specifically to rule out Crohn's, although it is not presenting that way, due to family history. Also ordered another ultrasound. He admitted it might all be from strep and hopes with the t&a surgery we will see resolution, but we don't know for sure. We know he is lactose intolerant and it is possible that lactaid pills before dairy are not helping him enough. He has been off dairy before, though, with no change in symptoms so I am questioning the likelihood of this possibility. So lots of possibilities, no real answers yet.

 

Strangely, he has been doing much better since last Thursday. No stomach aches or joint pain since then and he has been handling his emotions much better. We switched him from augmentin to Zithromax last Friday. I am not sure if the augmentin finally kicked in to fight an infection (he was on it for 9 weeks before the switch) or whether he coincidentally had a good day (been known to happen every now and then), and then the Zithromax kicked in for some more lasting improvement. Or it is possible that it is something else entirely.

 

I am not sure that this is helpful to anyone since we have no answers yet, but that is the update for now.

[Suzan]

I took my non-PANDAS son for a GI appointment yesterday. I know it is hard to keep everyone's story's straight so here's a reminder -

 

He has had ongoing stomach aches which began with a strep infection in 2008, elevated strep titers which have not come down into the normal range, elevated eosinophils, and moving joint pain which began 6 weeks ago. Endoscopy and ultrasound done several months ago were normal. All other bloodwork was normal. Rheumatologist ruled any any rhuem. disorders. He is the most emotional and anxious of my children, but overall happy, well adjusted, social, etc. No tics or OCD.

 

The GI ordered additional bloodwork specifically to rule out Crohn's, although it is not presenting that way, due to family history. Also ordered another ultrasound. He admitted it might all be from strep and hopes with the t&a surgery we will see resolution, but we don't know for sure. We know he is lactose intolerant and it is possible that lactaid pills before dairy are not helping him enough. He has been off dairy before, though, with no change in symptoms so I am questioning the likelihood of this possibility. So lots of possibilities, no real answers yet.

 

Strangely, he has been doing much better since last Thursday. No stomach aches or joint pain since then and he has been handling his emotions much better. We switched him from augmentin to Zithromax last Friday. I am not sure if the augmentin finally kicked in to fight an infection (he was on it for 9 weeks before the switch) or whether he coincidentally had a good day (been known to happen every now and then), and then the Zithromax kicked in for some more lasting improvement. Or it is possible that it is something else entirely.

 

I am not sure that this is helpful to anyone since we have no answers yet, but that is the update for now.

 

Hi, this is your NON pandas child you say? He just sounds like my pandas dd with the joint pain and stomach aches and improvement on zith. Have you had him tested for Celiac or gluten intolerance? So glad to hear he is doing better. Is he on the antibotics for a possible but unknown infection? Could his pain be related to the strep?

 

Susan

[sf_mom]

Debbie: I would still have his CaM Kinase checked once Madeleine Cunningham's Lab reopens in January just to confirm its NOT strep.

 

-Wendy

[Debbie1]

Hi, this is your NON pandas child you say? He just sounds like my pandas dd with the joint pain and stomach aches and improvement on zith. Have you had him tested for Celiac or gluten intolerance? So glad to hear he is doing better. Is he on the antibotics for a possible but unknown infection? Could his pain be related to the strep?

 

Yes, this is my non-PANDAS child, although we have wondered, together with neurologists, whether he has a very mild form that is going under the radar because my other children are more severe. It is a definite possibility that his stomach aches and joint pain are all strep related. We have had him tested for Celiac multiple times...its always negative. I have never taken him off of gluten. He is on antibiotics because he has high strep titers and we have two other children with PANDAS (also with high titers). The neurologists felt we may be passing a strep infection around the house and put him on antibiotics with the others to make sure we clear it. The plan right now is to keep him on until his titers come down into the normal range.

[Debbie1]

Debbie: I would still have his CaM Kinase checked once Madeleine Cunningham's Lab reopens in January just to confirm its NOT strep.

 

-Wendy

 

I am considering contacting the lab about him in January. However, with the increase in price, I am not sure we will go ahead with the testing, particularly if we are aggressively treating him with antibiotics and t&a surgery anyway.

[sf_mom]

Debbie: I can totally appreciate why you might not test '$$'. However, my concern is always....... if its a really resilient strain of strep, eradication isn't as simple as antibiotics and T & A sometimes and could crop up regardless of your efforts.

 

I've been communicating with Dr. Kaplan out of University of MN......... Taken from his bio: World Health Organization Collaborating Center for Reference and Research on Streptococci, Dr. Kaplan is primarily interested in the study of group A streptococcal infections and their sequelae.

 

He was able to solidified a few issues for me and Buster has been posting about them tirelessly on this forum. Strep can go intercellular! The possibility of a superantigen is real but yet to be proven scientifically FULLY.

 

Plus if it is strep the possibility of the particular strain being passed back and forth (PANDAS to Non-PANDAS) is very real in its contagious state: i.e. another strep infection.

 

I don't want to scare you but encourage you to test for the success/well being of your entire family. The last thing I want to do is test my 2 1/2 year old daughter but we have to.... given our circumstances and the fact that it looks contagious in our case.

 

I've attached our history summary again 'just in case' you haven't seen it or for others that might not have seen it.

 

November 2007 (IMPORTANT HISTORY): Sunday, Novemember 4, 2007 we had a playdate with a boy named Adrian who had a swollen gland on the left side of his neck the size of a golf ball. Exactly 10 days after playdate Corsa had what looked like pink eye in both eyes and a high fever for 4 or 5 days. Eactly 10 days after the start of Corsa‘s illness our 5 ½ month old baby boy Romy started showing signs of a similar illness. However, Romy symptoms seemed to be much worse with extreme restlessness and vomiting even after IV fluids. Within 24 hours of Romy getting sick he was admitted to the hospital and eventually diagnosed with Kawasaki’s. Romy received IVIG on day 5 of high fever and symptoms/high fever relented. At the time, I asked every Dr. who entered our hospital room if Kawasaki’s was contagious and explained my older sons symptoms in detail. I was told that they didn’t think Kawasaki’s was contagious and it was highly unlikely our other son had Kawasaki’s the week prior. I have recently discovered that our son‘s friend had peeling palms and feet (skin coming off in sheets) with a prior fever and rash at the time of playdate as well as the swollen gland. The peeling palms and feet was not communicated to Adrian‘s Dr. when his mother sought treatment for swollen neck gland. Adrian was diagnosed with strep throat Thursday, Novemeber 8th, 2007 and treated with several courses of antibiotics throughout the next 7 months in an attempt to eradicate strep. It was eventuallly determined he had weak immune system, sinitis and irritated adenoids that were eventually pulled June of 2008. THE SWOLLEN GLAND DID NOT RESOLVE ITSELF UNTIL ADRIAN’S ADENOIDS WERE PULLED. Our sons friend, still suffers from headaches, daily joint pain, weak immune system, separation anxiety, OCD behavior, TICS, chapped lips, dark circles under eyes similar to Corsa and Romy. There were two other children at playdate, one was continually exposed to Adrian and is exhibited similar symptoms and will be tested within next couple of months to confirm possible diagnosis of PANDAS. Bena, Romy’s twin sister and Corsa younger sister was also playdate (only female present), did not get sick and doesn’t seem to be exhibiting symptoms but will test her in the near future.

 

Adrian: CaM Kinase 147, Deficiencies in 12 of 14 Strep Pneumococcal Antibody Titers (Blood Draw in Feb. 2007, Retested Pneumococcal Antibodies 11/12/09), Anti-DNAse-B: 680 (CONFIRMED Rheumatic Fever at time....not all results listed)

 

Corsa: CaM Kinase 124 (Blood Draw taken 11 days post 5 day steroid burst), Deficiencies in 10 of 14 Strep Pneumococcal Antibody Titers, ASO: 244, Anti-DNAse-B: Negative (Possible undiagnosed Kawasaki's... not all test results listed)

 

Romy: CaM Kinase 148, Deficiencies in 13 of 14 Strep Pneumococcal Antibody Titers, ASO: Negative, Anti-DNAse-B: Negative. (Confirmed Kawasaki's at time.... not all test results listed)

 

 

 

-Wendy

[dcmom]

Hi Debbie- thanks for the update! As you may remember, my supposedly non-pandas daughter has been having stomach aches and anxiety since she had strep with her sister in February. For some time we thought it might be emotional reaction to stress of sister being sick (still could be). We did lots of GI testing, but did stop short of endoscopy (GI didn't think it was needed). We have started to treat her for a possible pandas variant, and did have her cam kinase done.

 

I can completely understand your hesitance on getting the cam kinase done. Unfortunately, at this point it is not a conclusive test. I have tried hard to limit testing to things that will affect my kids treatment options. Therefore, if treating as pandas- until you are ready to go forward to pex or ivig, having the test done may really not affect your solutions. $400 is a lot for a family with increasing medical bills.

 

The cam kinase test was a big help for my younger dd- she was 161 (I think)- which helped us get pex, which is what we wanted. It was not that much of a help in figuring the other dd out. Her cam kinase was 106 (I think) which is in the normal range, her other numbers were elevated, however. So in the end, it was relatively inconclusive- both Dr C and Dr L thinking it could go either way. She has been on 2 mos of full strenghth zith and is currently tapering from a steroid burst. Hard to say. I would say she seems happier, more compliant, less argumentative, slightly less anxious, and the stomach- while still bothersome, may be winding down a bit (although she would say no- could be placebo affect on me )

 

Anyway- just thought I would share. Please keep me posted.

[Kayanne]

Thanks for the update...I have been dealing with this in my house too, but it has gotten a lot better...so I'm not sure I should pursue anything yet...I personally do think two of my other children have a mild form of PANDAS too...it's just something that I have been closely watching.

 

I saw our ped in Nov, (unrelated to PANDAS), and I told him that after the New Year, I was bringing my dd8 in for her well visit, and I want to discuss the possibility that she has strep in her gut, he said that he would order the stool sample if I wanted.

 

But she hardly complains anymore, I'm not sure if I should pursue it.

 

~Karen

[Debbie1]

Well, I posted too soon. My son came home from school yesterday and told me he had two episodes of stomach aches during the day and some brief joint pain.

 

I am leaning toward not doing the CamK testing on him yet because he is not currently a candidate for IVIG or PEX and I am not sure what we would do differently at this point with positive results. We already suspect it might be strep related and are treating as such (in addition to exploring the other possibilities). Wendy - if you can tell me what you think we might gain at this point by having it done, I am open to rethinking it.

 

In terms of strep in the gut - we tried to get our kids tested several months ago (per Dr. L.'s request) and the lab messed up. When they didn't send the correct results, the Dr.'s office called and they said we don't test for strep in the gut. Why they took the samples from me then, I don't know. I called a few other labs, including a University Hospital nearby, they all said they cannot test for it. So if anyone is thinking of going ahead with the testing, be sure you have a lab that will do the proper test for you before you submit the samples.

[smartyjones]

there was an article posted by i think pandasdenmark that suggested that strep in the gut can bind with an enzyme instrumental in digesting gluten and dairy - thus leaving those foods open to not being digested properly. i thought this was very interesting b/c although my son did not exhibit digestive troubles, he tested sensitive to over 15 foods. i think it's that pesky strep that is at the root of everything!

[Kayanne]

there was an article posted by i think pandasdenmark that suggested that strep in the gut can bind with an enzyme instrumental in digesting gluten and dairy - thus leaving those foods open to not being digested properly. i thought this was very interesting b/c although my son did not exhibit digestive troubles, he tested sensitive to over 15 foods. i think it's that pesky strep that is at the root of everything!

 

If anyone can locate this article...I really would like to take a look at it....I can't seem to locate it...I'm a little pressed for time today....holiday stuff, ya know...

[smartyjones]

New article : "PANDAS ... in Autism? A Case History", By Cosford, 2009

 

i don't know how to link the thread but this is the title - try searching that and it should bring it up, i think

[peglem]

New article : "PANDAS ... in Autism? A Case History", By Cosford, 2009

 

i don't know how to link the thread but this is the title - try searching that and it should bring it up, i think

Here it is:

http://ojs.lib.swin.edu.au/index.php/ejap/...le/view/152/175

[sf_mom]

Debbie: I'm so sorry you continue to battle this problem. So, here is what I would do..... treat aggressively for strep. If it does not resolve then maybe reconsider CaM Kinase Testing. THIS THING your son is battling 'will reappear' if its a resilient strain.

 

As you know, my position is strong because of our personal situation. With Romy our 2 1/2 year old who had Kawasaki's at 6 months old does not have raised ASO or Anti-DNase-B, had one treatment of IVIG on day five of high fever.............. now, has low IgGs, deficiencies in all of his strep antibody titers, low white blood, low red blood and CaM Kinase of 148 'PANDAS'. Because it is so difficult to tell in a 2 1/2 years behaviorally we had to test and would have never known until much further down the road. We will most likely be treating him for PID in the near future because obviously the one IVIG was not enough at the time and he continues to fight a BUG. Because we know it was Kawasaki's, IVIG is our only choice of success against its resilient behavior.

 

We will use follow-up CaM Kinase testing in both our son's as a comparative of success and stabilization in conjunction with clinical picture and stable antibody titers: So, we will retest 6 months post IVIG, 1 year post treatment, 2 year post treatment, etc. Thankfully, given our current medical expenses, it is tax deductable and I couldn't think of a better way to spend $400.00 (unfortunately).

 

-Wendy