Please Help - Updates and So many questions

[Topaz1968]

So much has happened since the last time I posted here - but wanted to catch up and have some serious questions.

 

We saw Dr. B in CT and my DS (9 yrs old) was diagnosed with Pandas - very high strep count from blood work etc.

 

He was diagnosed with TS about 2 years ago and was put on Tenex over the summer due to some OCD symptoms - this was before we went to Dr. B. After being on ABX and Tenex for about 1 month - he seemed to be doing better.

 

Then, all of a sudden he started getting Hives and really bad allergies. Dr. B put him on Prednisolone (sp) which I know is a steroid of some kind to get rid of what was going on in his sinuses.

 

I also took him of the Tenex to see if that was causing the hives. Have not told the Neurologist this yet, I weened him off slowly. Anyway, the hives have gotten much much better and the allergies are almost gone - not completely. He is going for some allergy testing next month.

 

I had also taken him off the ABX to make sure that was not the cause. He is now back on the ABX - but not the Tenex.

 

Now, over the last few days - his tics have gotten really bad. He is shrugging his shoulders and making a noise -this is a tic he had a long time ago.

 

I just read that steroids can make the tics worse. I wish I knew this, as I don't think I would have put him on it. I am freaking out because I am not used to all these medications and now I don't know what is working, what is not working, what is making things worse or better.

 

He has been off the steroid for about a week now and I am hoping the tics eventually lessen over time. This used to happen with the TS where his tics would come on full force and then suddenly disappear for a while.

 

But Dr. B does not think it is TS - he is sticking to the Pandas Diagnosis.

 

I am so confused, I don't know what to do next.

 

I do not have the support of my husband as he is clueless to this whole thing and thinks nothing is seriously wrong. That is a whole other story.

 

Anyway - I am lost and would love some advice.

 

Thanks

[momofgirls]

Hi Topaz

It sounds to me like the steroids were maybe doing their job in slowing down the hyper immune response our kids have and decreasing inflammation. But sometimes I think when you used them and then stop, unfortunately things come back. It is just my opinion but I think of chronic underlying infection. I look at steroids as a bandaide that indicates your child does have some sort of infection triggered autoimmune disease. We used them too and with great success but once we stopped the steroids symptoms came back. At the time we did not know our daughter had lyme disease and later she tested positive on the Igenex western blot. The other thing that comes to mind is that the children with lyme sometimes do worse when starting abx due to the herx reaction. Is this your sons first trial of abx? Anyway, has Dr. B ordered lyme testing through Igenex for your son? If not I would check into that and ask him to check co-infections, strep titers, mycoplasma etc...maybe there is still some chronic underlying infection that needs further treatment.

good luck

kim

Edited October 21, 2010 by momofgirls

[Fixit]

So much has happened since the last time I posted here - but wanted to catch up and have some serious questions.

 

We saw Dr. B in CT and my DS (9 yrs old) was diagnosed with Pandas - very high strep count from blood work etc.

 

He was diagnosed with TS about 2 years ago and was put on Tenex over the summer due to some OCD symptoms - this was before we went to Dr. B. After being on ABX and Tenex for about 1 month - he seemed to be doing better.

 

Then, all of a sudden he started getting Hives and really bad allergies. Dr. B put him on Prednisolone (sp) which I know is a steroid of some kind to get rid of what was going on in his sinuses.

 

I also took him of the Tenex to see if that was causing the hives. Have not told the Neurologist this yet, I weened him off slowly. Anyway, the hives have gotten much much better and the allergies are almost gone - not completely. He is going for some allergy testing next month.

 

I had also taken him off the ABX to make sure that was not the cause. He is now back on the ABX - but not the Tenex.

 

Now, over the last few days - his tics have gotten really bad. He is shrugging his shoulders and making a noise -this is a tic he had a long time ago.

 

I just read that steroids can make the tics worse. I wish I knew this, as I don't think I would have put him on it. I am freaking out because I am not used to all these medications and now I don't know what is working, what is not working, what is making things worse or better.

 

He has been off the steroid for about a week now and I am hoping the tics eventually lessen over time. This used to happen with the TS where his tics would come on full force and then suddenly disappear for a while.

 

But Dr. B does not think it is TS - he is sticking to the Pandas Diagnosis.

 

I am so confused, I don't know what to do next.

 

I do not have the support of my husband as he is clueless to this whole thing and thinks nothing is seriously wrong. That is a whole other story.

 

Anyway - I am lost and would love some advice.

 

Thanks

 

i agree with kim...the steroid slowed his autoimmune condtion down but could hold..i would be on abx a while(4-8 weeks)jmo, before starting burst

 

and if you do a burst...as with my ds...we got worse before we got better....but we got way worse and then almost seemed recover for 4 days....

for my ds...he was probalby not on abx long enough prior to burst and yeast realllllllllly took off with the steriod..so we had new problems....

after many more abx's and other things...ds was severe...i got ready to go see doc L...she was unavailable at he time, but got appt in the future....

our DAN knows her protocal and suggest the taper several times....i was scared...but he was pretty bad,,and i figured...we''ll help him as he is in crisis or he'll get worse and time and my drive will find the next step....

Well....i will not do think i can be convinced to do another burst...the TAPER was such a gift.....

we had remarkable healing...that lasted till school started....we have been sawtoothing an seasawing ever since....

but we have held 40-80% of our gains...depending on, allergies, viruses, t&A, blah blah blah

with burst you can get rebound effect where it gets just as bad as when you started or a little worse..and that should subside if it is from the burst...

we got worse before better..but again he was not on any abx prior to starting..and i still think...maybe we have some intracelluar stuff or a parasite going on...not necessarily lymes...(was tested 2 pandas doc say not, but i have not been to a lymes specialist yet)...i think a parasite, not lyme..there are parasites everywhere!!!! like strep!

[danddd]

Topaz, hang in there. My dd9 got worse with steroids before a very brief improvement. It all does get so complicated. I took my daughter off psych meds asap after ivig. I wanted to know what was helping/hurting too. Remember that we all support you! I have made most of dd's medical decisions myself, it is hard, and often frustrating, but we get through.