PANDAS question

[bmom]

After the initial onset of last year, my son has been doing fairly well-just a few small bumps. This week we are back to bad ticcing. I had always thought he had fallen into the PANDAS category, yet wasn't sure-still not. this week I came down with strep-3rd time in our family this year (which also makes me wonder about PANDAS). Anyway, he was negative, am waiting on swab results-no sore throat. I am hoping to get his blood tested today. I convinced doctor to start him on antibiotics yesterday. Started with Pen last night. I was hoping to see a reduction-ok I was hoping for them to be gone today, yet they are the same. How long does it take if this is PANDAS related to see improvement? Also they seem to be changed or added on to each day. What do you think causes them to change so frequent? Thanks all - any advice would help as I am about at my wits end (again!!!!)

[P_Mom]

It can take several days to see improvement..also, Penicillin sometimes may not provide relief for your child at all, yet, they can still be PANDAS. Sometimes, different antibiotics are needed... Zithromax seems to work for many PANDAS kids.

[bmom]

Thanks Kelly, what are your boys on again for daily and what about if they have an increase? He had strep last June and after starting with a bathroom compulsion, pen did nock it out the first day. He tested positive that time. This time no. What is a stronger antibiotic- augmentin or pen? or are they the same? Thanks so much Kelly and anyone who can add. I am working on getting him into the doctor that was recently posted on in Vegas. I would take him anywhere if I just could decide which category he falls into.

[faith]

bmom,

when did you notice more ticcing, was it before or after you started with your sore throat? Also what would you consider bad tics, I mean what is he doing differently now? Any other symtoms, emotional, etc.?

 

I have tried antibiotics before for my son even when he was negative and I mentioned I didn't really see cessation of tics, however, that may be because his symptoms were not that bad. Perhaps those with the really intense symptoms will see a more obvious change? You are going to keep him on the full 10 days? My uneducated guess would be by day four to see some improvement. And just to mention, the criteria that puts the PANDAS label on would be if when the antibiotics course is over, then symptoms return more noticeable after a few days off, so look for that.

 

Faith

[P_Mom]

Bmom,

The very exposure to strep can cause an increase of symptoms, PANDAS kids do not have to actually contract strep. Since you had strep...this in and of itself can account for your sons increase. Keep him on the antibiotics in the event had may have contracted it and it did not show yet..this will help "stunt" the antibodies. Your son sounds like definite PANDAS to me.. just my opinion. Augmentin is a much stronger antibiotic than Pen., penicillin is failing a lot lately in regards to strep. Actually, when my kids had the strep that started this all, they did a full course of Pen and the strep was back in 3 days..it didn't work. I believe Augmentin is Amox. with an added acid for greater effectiveness...it is in the Pen. family.

My boys are on Pen VK daily..at this point an antibiotic is not needed to control their symptoms..they are doing well, mild stuff..but, if needed we would switch to probably Zithromax if their symptoms needed controlled. If something would happen and they got a big increase or strep.. I would do Chephalexin for a few weeks....if symptoms remained fairly strong after strep was eradicated (or whatever illness caused the increase), our next step would be a 5 day course of Prednisone... then back to prophylactic antibiotics. If my kids got bad and did not respond to antibiotics..and had a positive response to the Prednisone...we would consider IVIG. Again, we would only consider IVIG if all else failed and my kids quality of life had sunk... I do know at that point, IVIG can literally make these kids well and then many times they stay well!! (even with strep!)

You have an oportunity now to get his titers tested with you having strep...don't wait..take him and get them checked ASAP! You have nothing to lose by checking..and..you very well may get answers you are seeking, but, wait, and you could miss this opportunity.

Take care!!!

 

Kelly

[P_Mom]

Be careful about the symptoms needing to return after antibiotics in order to have PANDAS. It depends on the individual child..they are all different. Many kids titers fall rapidly. I know that is the case for many PANDAS children (tics returning after antibiotics) but, not all. I have two PANDAS kids, both responded to antibiotics, and when the antibiotic course was over, they continued to do well. I am just afraid to put a definite on this PANDAS thing, because, it is such a wide spectrum and when you limit it.. someone may miss a much needed diagnosis.

 

Kelly

[bmom]

Well, I would say that he started with frequent hand squeezes the same day as my sore throat. He has been pretty much tic free since the initial which was major ticcing a year ago. Aside from a 1 1/2 month eye tic that peaked with stomach bug. And a few one dayers of small tics for a total of 2 or 3 over the year. Anyway he began with a little emotional behavior a few days before my sore throat. Then me sore throat and him ticcing with hands. Me positive for strep/ him negative. It then went to what I am thinking may be a compulsion of trying to pop his ears. He said his ears were plugged and began holding his nose and trying to blow them open. I cleaned them and it did not help. He then went to opening mouth to sort of pop them and the nose holding and blowing. it has now mostly opening mouth quite frequently with eyes closed during this time and sort of eye brow raising sometimes nothing in an hour to sometimes every few minutes. He is on Bonnies vitamins and I have added mag taurate the last few days. He is doing epsom salt baths am and pm which only seem to help for about a half hour or so. I still see some hands once in awhile and the nose holding with blow, but are pretty much on the open mouth with eyes today and yesterday. What do you all think? It really seems to be tics or compulsion. Yet he does have trouble with ear wax so I cleaned his ears. Do you think this sounds PANDAS/strep case? He seems to be affected by video games and tv but only when sick.

[bmom]

Well, Kelly you must type faster than me as you snuck in two very helpful replies before I was done typing in to Faith's question. You have helped a ton. My doctor gave me Augmentin and his Pennicillin. I am just wondering what was stronger as I would love to switch. I am only half joking on that one!!! He has had a reaction to Keflex in the past 5 years ago so I worry about what to give him. Thanks Kelly.

[bmom]

The other thing I have wondered about, has anyone else noticed their child to have dilated eyes? For the last couple of months my sons eyes have seemed very dilated. They could have been before this and I just didn't ever notice. Yet they have definately been the last few months. Does this seem PANDAS connected?

[P_Mom]

YES!!!!!!!!!!! During episode, PANDAS episode, it is very likely that you child will have dialated pupils, almost to appear terror stricken or looking through you!!!

[cynditk]

Hi,

 

My son was diagnosed with PANDAS testing high with both blood titers. He does not have tics, but has generalized anxiety, need for routine/structure, rigid and unflexible, and very poor health. We have been trying to treat his health issues naturally for years, with some success, but this PANDAS diagnosis really concerns me.

 

He was also diagnosed with CFIDS this year. He is not functional much of the time- had to leave school, he is very tired all the time, and now picks up infections easily.

 

I am considering IVIG. Has anyone had experience with it? Anyone can give me advice about insurance-I understand you can only get coverage if there is an immune deficiency?

 

Thanks,

Cyndi