Feel like I lost him for the 2nd time

[MomtoJake]

My almost 6 year old DS regressed into autism at 18 mos. I was a "warrior mom" and we fought hard. On August 22 he started Kindergarten with no support and no one knows of his diagnosis.

 

On Saturday he stopped letting us kiss and touch him. If we did or he accidentally touched us he "wiped" it with his hand and then wiped his hands on the wall. He stopped sleeping on his pillow and would not lay where the pillow had been. He will not let me out of his sight if we are in the house. His handwriting reverted back to when he was still reversing letters and writing slanting down the page. When he wakes up his hands pop up to mid-line and move as if he is playing a piano. He is having meltdowns, overreacting to small things, screaming and crying often. I googled "Sudden Onset OCD" and knew immediately that he probably had PANDAS/PITAND. His pediatrician (amazingly!) thinks so too. She did a rapid strep that was negative and ordered 12 other tests. Unfortunately she would not give me ABX until after she gets back results.

 

My husband and I are devastated. I know I have to gear myself up for another big fight but autism has drained me. Over this week I have been reading this forum, and reading everything I can on the web. I know I am not absorbing most of it at this point. I am trying to do just a little each day. because I am feeling paralyzed and I can't let that happen. DS had strep in late July followed by Fifth's disease in mid August. I know I will need a PANDAS doc. I live in FL, near Dr. Tanya Murphy so hopefully she sees patients at this point.

 

I am very thankful I found this forum. I still have so much to read and learn but it really helps knowing you guys are out there!!!

[dcmom]

So sorry...

 

See Dr Murphy, and also consider getting in touch with Dr Eric Storch for ocd therapy. He (and is team) are amazing- we just got back from USF for a 3 wk intensive therapy for ocd. They get it. IMHO with aggressive medical treatment and therapy, this will be much easier/shorter than your autism battle (and maybe what was diagnosed as autism was really pandas?).

[kimballot]

I am so sorry that you are going through this - especially after going through a battle once before. Clearly, you are a capable and determined Mom and I hope you can find your "fight" to prepare for this next challenge.

 

I suggest you contact Dr. M's office first thing Monday to make an appointment. There is usually a 2 month wait. Your pediatrician sounds good and can manage things in the meantime, but get the appointment. Also, ask them if Dr. M would be willing to suggest bloodwork that you can do now that your child is in exacerbation so that she has the data when you see her. In 2 months his blood may look very different, and you want to be sure you have all the right tests now.

 

I wish you well and I hope you will continue to post and let us know how your son does.

[philamom]

Since its only been a few weeks since the strep/fifth disease, would she be willing to prescribe another round of antibiotics while waiting for the test results? Is there any way to change her mind?? Maybe you could bring her some articles (in the pinned section) on the importance of treating with antibiotics right away.

 

I am so sorry!

[Baylor]

I am sorry. I can not imagine how hard this must be for you. Praying they get treatment and blood work under way asap for him. A BIG BIG HUG!

[MomtoJake]

Thanks everyone for the advice and support! Some of the blood work should be back to his Ped by Monday. I will talk to her then about the ABX. If she says no I have another way to get them though another doctor. Which ABX do you think I should ask him for and for how long?? I also will call Dr. Murphy's office Monday.

 

Someone had mentioned that maybe his autism was really PANDAS. Thinking back I realized something very interesting. I remember that when he was very young if he had to be on ABX his autism symptoms got much worse- one time he started licking the sofa from top to bottom. As he got older I started realizing that his autism symptoms actually got better on ABX as well as when he had a fever. Food for thought!

[thereishope]

Rapid strep tests run a chance of false negative. In my son's first exacerbation, we had a false negative rapid and got a positive culture a few days later. My husband has gotten a false negative rapid as well.

 

Even if your child is not testing positive for strep now, July was not that far in the past. There are articles citing that it can take months after the strep infection for the autoimmune process to set in. The fact that your son has piano playing movements shoudl really add to your ammo of getting antibiotics. Even if she refuses to give abx in light of the otehr symptoms being present, indications of poissible SC is there and she should treat just in case.

[nicklemama]

Do not rely on the strep cultures and titers to determine if your DS has PANDAS. Mine has never tested positive for strep. He has PANDAS. If your ped won't prescribe w/out positive titers, move on to someone else, preferably a doctor that treats a lot of PANDAS kids, like Dr Murphy. I wouldn't wait two months though to be seen by her if you're not getting help from your ped.

[MomtoJake]

His rapid test was negative-- I don't see how it could be positive since the nurse barely got the swab in DS mouth!! I plan to have him on ABX one way or another by Monday. I do think the ped. will come around, but we'll see. Given everything, I can't see how he doesn't have PANDAS or some form of PITAND. As him Mom I am his first doctor!

[JJMom39]

I am so sorry for what you are going through. I am glad you have found this forum though. There is so much support here and a wealth of information. You asked about antibiotics. There is no standard treatment protocol for PANDAS/PITANDS so there is no one go-to antibiotic. Azithromycin (Zithromax) and Augmentin are two abx that are commonly used. There is regular Augmentin, Augmentin ES (extra strength) and Augmentin XR (extended release). Augmentin XR is the abx that was used by the boy in the book "Saving Sammy." Your child would be too young/small for the high dose it comes in though. There are plenty of kids who take Augmentin or Augmentin ES too. It can be a bit of trial and error to find the right abx for your child/situation. My ds9 has responded best to azith, but he has taken Augmentin XR to help him out of a flare. Other abx that are used include Omnicef, Keflex, Pen VK, and there are still others. Amoxicillin is often used by peds for strep infection, but there can be a high failure rate and it often does not work well for kids with PANDAS. That is not across the board, but I would be wary of using it for those reasons--my opinion on that. As far as how long to use abx, many dr's will rx for 10 days. That is not long enough when you are dealing with PANDAS/PITANDS. Advocate for at least a 30 day rx. If you find that the abx you start with is not helping, you can switch to another before the 30 days is up. But you want to have good, solid coverage.

[MomtoJake]

Thank you JJmom for all of the info! I will print this out so that when I talk with my ped tomorrow I can be ready. He did have Augmentin in the summer for his last Strep infection, but it was only for 10 days. Hopefully the ped will give it to him for the month. He can't do Omnicef and that whole class of ABX because he has a Carnitine Deficiency and it bottoms it out. Thanks again and wish me luck tomorrow!!

[airial95]

We're patients of dr Murphy's as well, we're in the Tampa area. She does prefer Omnicef as her abx of choice, but she'll use something else if he can't have it. For our initial consult, it only took 2 weeks tonget the appointment, so hopefully it will be quick for you as well. We were also going tom therapy there, and it was very helpful. Her office also just referred us to immunologynas well, and the immunologist she recommended was very PANDAS knowledgeable as well.

 

I'm not sure where you are in Fl, but we also have a very PANDAS friendly pediatrician whom will prescribe abx based on PANDAS symptoms, even with a negative culture.

 

In the meantime, try giving him some ibuprofen. It can help reduce the inflammation to the brain and can offer some relief of symptoms. It's a miracle drug for us!

[beeskneesmommy]

MomtoJake: You know, the 1st thing that struck my mnind was the question as the whether your kiddo has ASD or whether he has had PANDAS for a long time. My son started with PANDAS at a very young age - was diganosed at age 2.5, but I suspect the onset was as early as 18 months. he dod NOT show any ASD behavior or symptoms early on, in fact, he was talking fluently by age 2. However, when PANDAS began to strike hard around 2.5, it was very evident that there was something wrong, particularly when he was Strep+ and with recession of symptoms when he was given abx for Strep. He just turned 5 and has been on the right abx to tackle the problem (never and other meds than abx) and he is completely restored at this time to being a normal, healthy little kid. I may be way off the mark, so please do not get your hopes up d/t this response. however, it may be worth seeing a specialist that will dig deep for answers, as not all do! We see Dr. Bouboulis in CT. Please feel free to IM me. Warm thoughts your way --Kath

[airial95]

I also echo Mathis post. Our son was 20 months at onset and 26 months at dx. He was speaking in full sentences at 15 months, and regressed verbally significantly after onset. Because it was so sudden and so drastic of a regression, our ped doubted autism, but did suspect that we may see Aspbergers (can't confirm til they're older though). My son will be 4 next month, and we're struggling more with preventing strep than anything, but he also shows no signs of ASD at all with nothing but abx.

[Dedee]

You have already gotten great advice here. I know you must already be worn out from the fight with autism diagnosis. However, you are already armed with the strength and determination that comes with knowing you are your sons champion and clearly you are doing a great job. You have a great advantage over many in that you live close to a great PANDAS doctor. Dr. M. is awesome. We drove over 12 hours to take our daughter to see her. We also did the CBT program there with Dr. Storch and his team. My daughter also had a negative strep test and her titers were only barely elevated. Dr. M. was the one who tested her for myco p. and that was where she came up extremely high. So your son may be triggered by things other than strep. I can only remember my daughter having strep once when she was around 2. She was extremely difficult after that but we thought it was the whole terrible two's phase. So just in case it is something other than strep, you may try to get your ped to start with something like Zithromax which will cover both strep and myco p. If the strep titers are elevated, your standard strep antibiotics will probably be fine. You are doing the right thing by jumping on this quick. Stay strong, as you already know, the rewards will be worth it in the long run. Best of luck.....

 

Dedee