If symptoms started 5 yrs ago, and no diagnosis since, can antibiotics

[NVAmom]

My son showed first signs at age 2. He was not diagnosed until he was 11. He started treatment last Oct(augmentin 875mg - 2x/daily since Oct 2009; 1 course of steroids after exacerbation from his sister having pink eye). He has made HUGE progress. He still has a ways to go but this time last year our entire family was held hostage by his symptoms but one short year later I feel like I'm getting a son back that I never knew I had.

NVAmom, I pray we are in your shoes this time next year! I am so glad to hear that your ds is making progress. This reply struck me because of the way you said, your entire family was held hostage. I am living that right now. As a matter of fact, I have an opportunity to go out with friends this evening with all the kids and i just want to hide all of us. I am ashamed to say that. We have not gone out at all, outside of school in over a month. I have another child that is older that i know is suffering by this too. I feel so guilty to say the least. I just said to my dh today that I wish we were normal and could just go out and have pizza with friends and not have a care in the world. I feel awful that I do not handle these times well. I think I might bite the bullet and go out this evening and just let my kids have fun like they deserve. thanks for your reply. It makes me feel better knowing that there are others out there coming into this late in the game and still seeing success. I am happy for you.

 

I am so glad I could give you hope. I think that is what we all want for each other.

 

There were plenty of times that I made up excuses as to why we could not join friends on social outings because I did not have the strength. My son would do everything he could to try to get us to cancel our plans and if it did not work we were usually sorry we made the attempt. It is hard not to feel guilty but we are all doing the best we can. I will join you in praying, but for you to see even more progress than I mentioned, within the next year. One tip I learned from Buster, that helps me see small ,is to chart the symptoms everyday. When I feel we are no longer making progress I can look at the chart with amazement and thankfulness for the little things....like my son going outside to play with friends. I hope you have a great evening out!

[pixiesmommy]

My daughter likely had strep for the first time at about 9 days old, and was not sudden onset. She started ticcing at around age 6.5-7 yrs and then raging soon thereafter and we managed to get our FIRST diagnoses of Tourette's, OCD, and ADD all at once at this time. I had tried to get her diagnosed with things previously (her entire life) but to no avail. About 1-1.5 years after the really bad rages began, we found this board and a few months later found Dr. K.

 

We were diagnosed using a steroid burst and observation and then we went straight for the IVIG because her tics and rages were out of control. The tics were pretty much eliminated within the first week post-IVIG, but I am told that they are usually the LAST to go. She still has minor eye-blink and finger-flick from time to time, but the huge muscle head-toss/shoulder-shrug and bark-cough thing are gone. She has been on prophylactic abx for a year and will continue through Dec, but we are also currently pursuing Lyme to rule that out.

 

I would see one of the big PANDAS drs and try to get IVIG or PEX. According to some on the board and Dr K (in Chicago) PEX is usually better for tics and IVIG for the behavioral symptoms of PANDAS.

[swim]

I read through many posts and it seems that most kids on abx and/or steroids were diagnosed and treated fairly quickly after pandas symptoms started. Am I wrong? My dd's tics started almost 5 yrs ago (had strep and impetigo 4-7 months prior to symptoms coming out)and the idea of pandas was dismissed by pediatrician since aso was normal. Here were are 5 yrs later and finally trying to treat what I THINK is pandas through a great doc that is willing to help. We are doing omnicef now (gave up on zith after short time since no improvement and possible worsening of symptoms)and still nothing. Can it even help now after this long? Is it even possible to still have an active infection after this long? Sorry if it sounds silly but I am new to this and trying to figure it out. I get that if it has gone into autoimmune mode then steroids would be the better choice.

 

Has anyone else jumped in late in the game like me after your child has had symptoms for years and then tried treating with this protocol and had success? I am just not sure I should be going down this road anymore. Any advice?

 

Our son had symptoms for about 7 years before we started treating for PANDAS with antibiotics (keflex). Don't give up! Not every antibiotic works the same for every child and it takes time. My opinion is that it is never too late to start treatment.

[kimballot]

I'll add my story - sorry if it is a repeat for some. My son could never breathe right. Always looked like he had a stuffy nose from the time he came home from the hospital.

 

ABX started at 4 months, and he was clear and happy on ABX - stuffy as soon as they ended. The cycle started and continued until he was 7 years old, with adenoids out and sinus surgery along the way.

 

Behaviors started around 1 year old and were always unmanagable when he was off ABX for a week or so or even when he was on prohylaxis. By age 7 even highest doses of augmentin or biaxin could not calm him down. We stopped ABX. His tonsils turned white a few days later. We started ABX again and scheduled his tonsillectomy. We thought it may be PANDAS. Post tonsilectomy he was much calmer and we spent 3 years working on allergies / yeast / gut stuff/ behavior modification etc.

 

Then he had a fever and cough followed by resurgence of OCD symptoms. No positive culture / no eleveated strep titers. We were told it was not PANDAS (we later discovered it was probably mycoplasma). We did CBT. A few months later he recovered. In the Fall of 2008 he started having trouble attending in school, after having a sinus infection. It got better in the spring.

 

In the Fall of 2009, everything fell apart after H1N1 and did not get better. We ended up with a PANDAS doc who ordered a CT scan and found a large mucocele (infected cyst) in his sinus. It had eroded his sinus bone. It had been there a very long time. By the time we found it my son could barely get out of bed in the morning and could not walk 100 feet without holding onto my shoulder for support due to fatigue, depression, and joint pain.

 

He had the mucocele removed in June. He is still on zithromax (500 mg), but we will be tapering that down to prophylaxis soon. He got stronger each week this summer. He has some very small tics and some problems with annoying behaviors at the end of the day when he is tired. His handwriting is bad. He passed all of his state tests last year, so I guess he learned something along the way. This year he understands his school work and has been responsible for completing it and submitting it. He has friends. He is in a fitness program and is exercising regularly and getting into shape. He wants to go to a good High School and talks about college.

 

I wake up everyday and pray that today will NOT be the day he gets sick and goes into an exacerbation again. I also pray for all the other kids with PANDAS.

 

When I first joined this forum this year I was hoping to just get my son to be functional in school again, and maybe rely on psych meds to help him stay functional. The parents on this forum have helped me to see that there is a possibility for more. There is a possibility that he can actually feel good and healthy most days - just like the most other kids do. I am aiming for that possibility!

[Stephanie2]

I don't think it is too late (based on my own experience with DS5 who suffered for 4 years B4 we got it under control). But you may need many tools to come down hard on it. Here is what I had to do:

 

1 infusion of IVIG (1gr/kg)

Spironolactone (immune mod and anti-inflammatory)

Low Dose Naltrexone (immune mod and antiinflam)

Enhansa

Several rounds of high dose abx

5HTP

I'm sure I am forgetting something!!

 

Best of luck!

[momaine]

My dd had gone undiagnosed for over 3 years when we finally figured out it was PANDAS. It's been ten months since we figured it out and she is doing amazingly well, though she is not yet at 100%.

 

Augmentin worked at first. Then she got sick and worsened. Added in Azithromycin and she began improving again. A few short steroid bursts gave her additional relief. Then switched to Biaxin thinking maybe it was from Myco and she worsened considerably. Went back to Azith and Augmentin with some long steroid tapers (and treating allergies) and she began to improve again. Got IVIG 7 months after beginning antibiotics. Improved tremendously and at that point was able to get her off Augmentin and steroids. Had second IVIG and then within a week she got a cold followed by a sinus infection (first week of school)and symptoms began ramping up again. Put her back on Augmentin and symptoms evened out within 24 hours and she is now, a week later, improving again.

 

But what I really wanted to say is that, despite being untreated for over 3 years, when my dd's symptoms abate (first with antibiotics and steroids then with IVIG) they just go away and she doesn't have left over OCD/anxiety to deal with. She is either overcome by the symptoms and unable to deal with them, or they just go away. So, I KNOW that when she is 100% that she won't need additional therapy to get over any left over issues despite the fact that she struggled for so long. For some that might not be true, but for her it seems that way. (and she hates therapy so that is not helpful, but she is strong and she pushes herself out of her comfort zone frequently which is really what therapy teaches)