post-strep syndrome

[kimw]

My son who is 6, has been sick with Strep Infections consistently (antibiotics > 5 times a year for the last few years and this year is the worst: 10 times: & 3 times in 1 mo.). Also, what is intersting when he was in Kindergarten we now understand a lot of things we didn't then. He was blinking his eyes a lot, ADHD, grunting sounds,and his hands would shake and we were told he would out grow it. Also, he showed signs of anxiety and we didn't think too much of it as it was mild. He didn't do well in Kindergarten and we refused to have him stay back b/c we knew he was smarter than that.

 

Well, these last 3 months have been very terrifying. I saw my son detoriate before my eyes and no one would admit him for me till he was incapacitated.

 

Last week of July he came down with a fever and we took him to his dr. (strep was negative but it was the first day we tested so if we had waited it could have showed up positive). We begged the doctor to put him on antibiotics. Soon after he was sick again but with bronchitis and was on antibiotics again (we asked for it of course) and nebulizer. First day of school, he was limping, showing signs of worst tic disorders (head movement where chin would meet chest over & over, and major anxiety as he didn't want me to leave where he made a scene). Within a week he was sick again with high fevers, diarrhea, and swollen tonsils with puss. His behavior worsened (OCD, TIC, lack of reasoning). I felt like he regressed to toddler phase. I had mentioned PANDAS and not one doctor took me seriously (only 1 did). Basically, we ended up in ER 3 times and no one would admit him and would only refer him to specialists. He was DXed with Reactive arthritis and minor tic disorder and referred us to a neurologist and scheduled an EEG, the 2nd time he was DXed with something else (related to arthritis) and this dr. did mention PANDAS and he referred us the ID specialist. The 3rd time he was DXed with gastritis and dehydration. In the middle of this, we had an appointment with an ENT and she recommended strong antibiotics and scheduled surgery to remove his tonsils and adenoids. During this tx, my husband gave my son celebrex and my son was the old boy we knew. However, when he finished his antibiotic and didn't get celebrex he couldn't walk at all the day after but could the next day (he was limping of course) and his behaviour was never anything I've seen before (under the table screaming, crying, and hands over his ears because he didn't want to do his homework). We went to the ID specialist and she did blood work. She referred us to a Behaviourist, a Neurologist, and a Rheumatologist. She also ordered an EKG & echo and all came back fine. She mentioned that PANDAS is a controversial diagnosis and gave me an article to read (unbelievable). During this time, we found an Immunoligist. He believed us and gave us strong antibiotics but it was already too late as my son worsened that week with major chorea movements and dilarium (his throat was swollen again and he had a fever). By the next day he could not walk at all (crawling) and by the time he was admitted into the hospital he was incapacitated and they DXed him with rheumatic fever. My son was put on IVIG for 5 days and iv antiobiotics for 12 days, etc and had to take therapies (physical, occupational, etc). He was discharged on the 16th day with post-strep syndrome (changed from rheumatic fever). The following tests were done in the hospitial: a bone scan, ct scan of brain (done on 3rd visit to ER b/c we asked for it), MRI (which I requested) of brain, and another MRI with contrast 10 days after the first one. All was fine except for the 1st MRI which revealed slight markers indicating possible inflammation of the brain lining. He also had a lot of blood tests (lupus, lymes, thyroid, ANCA titers and all were fine. A spinal tap was also done and it was fine.

 

By the way, the most consistent blood work was his sed rate and CRP levels that were off the charts. Also, his ASO titer was high (100-199) on 8/31 (1st time in ER) and then even higher weeks later (400-799) on 9/24 the day after he was admitted to the hospital.

 

The Immunologist who believes that he has PANDAS suggested that my son may need plasma exchange.

 

Since my son has been discharged, he still has bad chorea movements and behaviour (& anxiety) and it worsens when he is tired. Also, my son is taking 5.4 ml amoxicillin 3 times daily for 30 days (b/c he was tested for lymes & results were not back yet) along with 4ml Naproxen 2xdaily, 1ml neuronton 3xdaily, 30 mg of prevacid once daily. I also give him culterelle in the am. He is supposed to change from amoxicillin to penicillin 2xdaily till he is 21.

 

Are there any other suggestions that might help us? Doctors in DFW who can help us order a plasma exchange if we need it?

[thereishope]

Welcome.

 

My son who is 6, has been sick with Strep Infections consistently (antibiotics > 5 times a year for the last few years and this year is the worst: 10 times: & 3 times in 1 mo.).

 

The 3 times in one month may have been one infection that the docs assumed had cleared but didn't.

 

Soon after he was sick again but with bronchitis and was on antibiotics again

 

By any chance do know if the bronchitis was mycoplasma pneumoniae aka walking pneumonia? What antibiotic did he go on that time?

 

Are you able to switch from Naproxen to Ibuprofen? Ibuprofen has been more effective in PANDAS kids when parents have tried both NSAIDS and compared them. With all the meds he is on, you may want to ask a pharmacist or the doctor first. If he's not improving, he probably needs a different antibiotic. Pen and amox aren't very kind antibiotics to the majority of PANDAS kids on this forum. Many take Augmentin or Zithromax as a prophylactic.

[kimw]

I can't remember the name of the antibiotics he was on for bronchitis as I never used it before. It started with a C and it was a 5 day tx. He had the mycoplasma pneumoniae IGG tested in September and it was normal. We are supposed to have it tested again since it can always show up later. I already plan on changing his meds when we follow-up in 3 weeks, but I think we need to sooner. Also I am thinking of cancelling the follow-up appts with the specialists in FW since they don't agree with PANDAS.

[amyjoy]

Sounds just crazy hard, so sorry you are going through all that.

 

my understanding is that plasmaphoresis works especially well for the chorea / tic issues.

[colleenrn]

I am so sorry for what you are going through.

 

Given how sick your child has been, I would really ask/beg/out right insist on changing his antibiotics to something much more effective than amoxicillin. Amoxicillin and penicillin can have up to a 25% failure rate with strep.

I am surprised they would even put him on amoxicillin after he has been so sick. Zithromax or a high dose of Augmentin would be much better. Even a cephalosporin (keflex or omnicef) would be better than amox.

 

Colleen

[mom love]

kimw, I am so sorry for what you have been going through. You and your family are in my prayers.

 

First of all, is that a prophylactic dose he is on now? There is a good chance he needs full dose for a long time. Read Saving Sammy if you haven't yet. I agree with posts about amox. Although many on here see good results on it, it does have a high failure rate compared to others like augmentin and zithro and omnicef. If titers are still high, full dose should not be controversial. In my very humble opinion, I would stick with the immunologist since he believes in pandas. Give whatever doctor you work with a copy of Saving Sammy to keep. Figure out how soon you can do the T&A. Be careful of all psychiatric meds. Stick with motrin and abx at first if you can until you consult with a pandas doc. Contact a pandas specialist. Did they not do myco p igm? Where do you live?

[kimw]

Yes, he is on prophylactic dose now till he is 21 (eventually twice daily instead of 3). They are changing his amox to penicillin in 3 weeks, but I called today with all of your suggestions. I bought the Saving Sammy book online yseterday and I never thought of buying one for the specialists and our family doctor. That is a great idea, so thanks for the advice. I will buy ibuprophen today. His myco p igg was normal (did nto do myco p igm). I am in the DFW area. There is another parent here who has a PANDA child and she has helped me find some doctors. However, the ones for plasma exchange are in San Antonio or Washington. I contacted Dr. K but he is expensive so I think we will be fine with the immunologist since he is covered under our insurance.

[MSmom]

Kim, I don't have much advice for you for local medical help in your area, but I wanted to lend my support! My daughter,age 16, has had several bouts of rheumatic fever illness following untreated strep, as well as PANDAS issues. It has robbed her of much of her childhood, as we didn't know what was happening until her last bout in 2009, but even when I figured it out, it was extremely hard to find help locally. Your son's illness does sound much like rheumatic fever, based on the symptoms and labwork--It's interesting that they changed his diagnosis. At least the doctors have realized your son needs abx until age 21 (although I agree that they may want to change it to a more effective one.) Our local docs were clueless and worse, a bit cruel, practically accusing my daughter of school avoidance (as she sat on the examining table, pale as a ghost, barely able to stand for 5 minutes at a time! I think they they thought Munchausen mom for sure!) She takes months to recover both physically and mentally following these bouts (close to a year.) In addition to the extreme fatigue, fevers, nausea, etc., she has to deal with the persistent thoughts and worries, confusion, lack of conentration, loss of memory, separation anxiety, and just anxiety in general. Thank God for this forum and the good medical help I have found because of it. I have felt in the minority here, having a child that is so physically devastated by strep, in addition to PANDAS. She just had her first IVIG a few weeks ago and is on Augmentin. I am praying this will be the turn around for her. She is beginning to give up. We have to travel for appropriate medical care, as there are no experts close to us. I hope you will find medical help close to you! (but if you can't, traveling is well worth it.)

P

[RNmom]

kimw,

I am so sorry that you and your son have to go through this. Your story has some similar features to that of my son (who is now 14). In his case, tonsils were reinfecting his sinuses over and over. He basically had one long sinus infection treated with multiple antibiotics over 18 months. His tics were only better when on antibiotics (Augmentin, alternating with Cipro, alternating with Cefuroxime, with long "breaks" in between). Finally, after 18 months (and one pediatric neurologist who said it can't be PANDAS because his strep titer - the ASO - were negative) my son's condition exploded into catastrophic PANDAS. We live in the D.C. area and were able to get to Dr. L. who eventually admitted him to Georgetown Hospital for plasmapheresis. It is the only thing that has turned this illness around. We tried long term antibiotics, steroids x one month, tonsillectomy, IVIG, and then plasmapheresis.

I am writing this to you to encourage you to work as hard as you can to help your son access plasmapheresis. It will not be easy - it wasn't for us. But, the struggle is worth it. If you would like more information about the Dr. we see and how she helped our son you may send me a personal message.

I wish you all the best. You are fighting hard for your son and he is very fortunate to have you in his corner!

[kimw]

Ok, I just heard that the ID specialist wants to put him on pnVK for long term not the ones you all mentioned. Are the abx you mentioned for long term or short term?

[thereishope]

All the antibiotics mentioned (Augmentin, Zithromax, Omnicef) have been used long term by kids on here. As for long term penvk, I think a couple have had success with that, but not many. I'd be worried to switch to a prophylactic until you believe the infection is gone.

 

Here is an article at the falure rate of amox and pen with strep

http://www.entrepreneur.com/tradejournals/article/169459644.html

[RNmom]

kimw,

Can you call the doctor back and "suggest"/ask for augmentin instead of penicillin?

[SarahJane]

I'm not in TX (so I can't offer dr advice there). I'm just now getting ready to get treatment for our son (dx was yesterday, so I'm still sorting thru all that too). I did want to lend my support to you tho'. We know what you're going thru, and you can find good info on these boards. Good luck and find courage that you are not the only one this is happening to...it might feel like it but you're not. We're here. WE'RE here. WE'RE HERE!

[Stephanie2]

Wow, your plate is very full! You will get relief when you get on the correct meds. For many of us it is a long journey to finding 100% resolution, but boy do you need some quick relief, even if only 50% improvement!

 

Stay strong. The medical community has a way of being ignorant and condescending at the same time (a maddening combination for us moms). These people will only bring you down and drain you of the little energy you have to fight this disorder. Find a good doctor who is 100% in your corner and who is well-versed and accessible. You can't afford to sit around waiting for abx when they are needed YESTERDAY!

 

Best of luck and keep us informed!

[kimw]

Thank-you everyone for your help. I am definitely overwhelmed & trying to understand as well as do the right thing. The immunologist said to go ahead with the pnVK till more tests are done as he thought the titers were not that high. I'm so confused:(. But we are submitting a special urine test the immunologist gave us & we meet him in 2 weeks. My son is 3 weeks post ivig & 1 week post iv antibiotics & has been on oral abx. I guess i need to be patient but it is so hard & in the meantime heartbreaking to see my son as he is.