WWYD? I'm really at a loss at this point and don't know what t

[tantrums]

Brief summary again since I haven't been here much lately...

 

DS is 7. He had H1N1 in October 2009 and then a couple of weeks later started with severe seperation anxiety, refusal to sleep, obsessive fears about death and poison, verbal and motor tics, rage attacks and severe hyperactivity. This all escalated over maybe a 2 week period in November/December. He was rather quickly diagnosed with PANDAS due to our wonderful family doctor and suggestions from people I knew. He was put on Amoxicillin and it worked - he was about 85% better - for a while...

 

He was good for about a month - 6 weeks then it all crept back. First neuro we took him too dx'd Tourettes. He was going rapidly downhill at this point and became violent. Our family doctor put him back on amoxi and it didn't work. She tried Omnicef and it again, helped briefly. Did ASO and antiDnase and they were elevated.

 

Went to Dr. T who agreed with PANDAS as did CHOP. CHOP doctor also says he has Tourettes however. Psychiatrist DX Tourettes, PANDAS, Aspergers (which he did NOT have a year ago) and Intermittent Explosive Disorder.

 

CHOP said they don't know what to do and we should go to Yale. We had just finished a steroid burst coincidentally due to a shellfish allergy and the steroids made him MUCH worse so that gave more weight to the TS diagnosis. However, when he is on ABX, his tics are better. Also started strattera which helps the ADHD and rage attacks.

 

We have 3 days left of Azithromiacin. He has tried Omnicef, Biaxin, Amoxicillin and Azithromiacin now. None have done much good. After several months of ABX with no break - his tics are only increasing - he is now having a pretty extreme arm movement which I've never seen before.

 

I AM going to get the Cunningham test done. We had to wait due to the steroids unfortunately.

 

I really can't tell now if this is PANDAS or TS. I'm getting frustrated with all the different opinions. I mean, the doctors we've seen have really all been WONDERFUL and try to help, but are more opinions going to help? Do I keep trudging on with more and more doctors and more opinions?

 

Main question here at this point is - would you get more ABX? I know Augmentin is best, but he is allergic to it, so that is out. I am seriously thinking it may be best for us to try just NOT using any more for a while and see if it makes a difference. Is that the only way, besides hopefully the Cunningham test, to know if it's TS vs. PANDAS?

[tantrums]

Oh - just to add a little bit - It was NOT Dr. Elias that we saw at CHOP I felt adequately warned there and didn't waste my time. We saw the chief of rheumatology who despite not being able to really help, was WONDERFUL!

[Fixit]

Tantrums...you may have cleared any infection your child has...

it may have become autoimmune where it's like a car on top of a hill...just waiting for a fly to land on the hood and downhill it goes with no brakes...

 

Allergies are starting havoc for my ds...

 

my child used to completely remit with abx alone in 4 weeks...used too!!!

and other parents will say abx worked..try next time..and no longer works ...need to change

 

the burst made ds worse at first then we had very nice days, then gone

 

and i was so concerned ..ready to go ivig, got refused...

decided if i had go out of pocket..while ds was still young i would go see doc L and get pex...

her protocal is a steroid taper...

well we didn't get worse this time as now i know to watch yeast with it...and we got to a full 90% better...unfortunately we've lost that ...we are not as bad as our worst...but you know...

 

EVERY CHILD IS DIFFERENT!!!!!!!!!

Even among panda/pitand syblings(sp)

[Megs_Mom]

Hi - I am so sorry you are having such a tough time. If I were you, I'd definitely do the Cunningham test. Not a lot else will make you feel comfortable that it's PANDAS, and let you focus your energies on an infectious cause. It certainly sounds like that is the situation. I would ask for another month of abx while you are testing, just to be safe. Then I would quickly run an immune panel and an allergy panel for your son. I spoke with one of the PANDAS "experts" (doc, not parent ) recently about what to do if a virus has become chronic, and the suggestion that came back was that this would be a situation where IVIG would be a good answer. I would not suggest IVIG casually, but this may be something you need to explore. I would also find an ERP therapist, if you son has any OCD - this will help him cope while you are finding answers for him. There are some great books out there - there is a thread about this on the forum.

 

I'm sure others will weigh in here - we had a dramatic and debilitating case, but our solution, so far has been relatively simple, so I don't have the range of experience that many here do on the treatment protocols. But my heart goes out to you, and I hope you find answers soon.

Edited September 15, 2010 by Meg's Mom

[dcmom]

Tantrums

 

My older daughters story starts the same as your son. Pandas had been started for her, but very mild and we didn't know it. Nov 2009 she had h1n1- and she started going downhill. Dec we did steroids and abx, she was perfect.

 

Jan 1, done w/ sterroids but still on full strength abs. She gets an EXTREMELY mild cold, goes off a cliff. Within a month she is out of school, agoraphobic, anorexic, aggressive, depressed, refusing to shower, etc, etc. We do steroids again, they do not help.

 

We then did PEX, which gave her an immediate80% reduction in symptoms, she continued to improve.

 

So- not responding to abx and/ or steroids does not mean it's not pandas.

 

Could you try a month long steroid burst again? Could you try zithromax?

 

Hang in there, he will get better...

[peglem]

What I would do is go see a PANDAS expert. All those other DXs are only labels for symptoms, and treatment for them will only address symptom management. PANDAS describes an underlying disease process. A PANDAS expert will most likely have some ideas about what to do in your situation and are more likely to have seen the sort of thing you're dealing with. Their treatment ideas will attempt to target the cause of the other "DX's".

[tantrums]

We have had all of the immune and antibody panels done. I'm amazed my son has any blood left!! There is no other infection - no mycoplasma, no lyme, no pneumococcal... His ASO titer came down slowly and steadily. I had the immuno throw a new one on there when she did the last allergy blood test - just to see since he has been getting worse again. It was low.

 

We see Dr. T so we've had all of his bloodwork and then some from our immunologist and various other doctors along the way.

 

He actually has weathered the abx VERY well. Surprising!! The only issue he had was vomitting from the Biaxin, but he did get used to it after a few days. Really shocked me since I can barely handle an ABX myself.

 

Immuno wanted to do IVIG but insurance flat out said NO WAY NO HOW! They actually have PANDAS on their list for things they will NOT do it for. Of course, it is a known no-no for TS and since he has that DX as well, that didn't help the cause. PLUS failing the steroid "test". We got a case manager with the insurance company who says she is willing to do all she can to fight for IVIG but is being realistic and based on whats done so far, it won't happen. Also tried based on his subclass deficiency, but wouldn't fly.

 

I emailed Cunningham again today and requested the test. She had answered me last month, but it was too soon after his steroids.

 

I guess what I'm thinking is - if I do a REAL trial with no ABX and he really does go downhill, I'll know its pandas and not TS. If he continues to float along at the level he's at without them, then it's more likely TS.

[kimballot]

Tantrums - when my son was 7 he was also at a point where ABX were not helping at all anymore. In our case, we stopped ABX and found out he was harboring bacteria in his tonsils - got his tonsils out and were able to get him off abx for 6 years. However, at that point he was a mess because the abx had really wrecked his body - we did not know to balance the other bacteria and yeast / fungus at the time, and it took several years to straighten that out.

 

So ... some things that come to mind when I read your story are:

 

1. Look for underlying infections / sources of inflammation - These do not have to be strep. It could be allergies or fungal infections.

 

2. Ask about getting a prescription for diflucan or some other antifungal.

 

3. Do lots of probiotics - a few hours away from the antibiotics.

 

4. I fully agree with the others who recommended immune status panel and other blood work. I cannot believe how much I learned about my son and with his bloodwork over the last 6 months and it really helps to understand and plan his treatment. You do not mention if your son has been tested for mycoplasma, and lyme as well as having s. pneumonia titers drawn. Many are also finding C3D levels beneficial in udnerstanding the autimmune piece.

 

 

5. It sounds to me like you've gotten lots of different diagnoses... now you need someone to pull it all together. Is Yale a reasonable option for you (as far as time / money/ travel, etc)? Keep us posted!

[matis_mom]

Brief summary again since I haven't been here much lately...

 

DS is 7. He had H1N1 in October 2009 and then a couple of weeks later started with severe seperation anxiety, refusal to sleep, obsessive fears about death and poison, verbal and motor tics, rage attacks and severe hyperactivity. This all escalated over maybe a 2 week period in November/December. He was rather quickly diagnosed with PANDAS due to our wonderful family doctor and suggestions from people I knew. He was put on Amoxicillin and it worked - he was about 85% better - for a while...

 

He was good for about a month - 6 weeks then it all crept back. First neuro we took him too dx'd Tourettes. He was going rapidly downhill at this point and became violent. Our family doctor put him back on amoxi and it didn't work. She tried Omnicef and it again, helped briefly. Did ASO and antiDnase and they were elevated.

 

Went to Dr. T who agreed with PANDAS as did CHOP. CHOP doctor also says he has Tourettes however. Psychiatrist DX Tourettes, PANDAS, Aspergers (which he did NOT have a year ago) and Intermittent Explosive Disorder.

 

CHOP said they don't know what to do and we should go to Yale. We had just finished a steroid burst coincidentally due to a shellfish allergy and the steroids made him MUCH worse so that gave more weight to the TS diagnosis. However, when he is on ABX, his tics are better. Also started strattera which helps the ADHD and rage attacks.

 

We have 3 days left of Azithromiacin. He has tried Omnicef, Biaxin, Amoxicillin and Azithromiacin now. None have done much good. After several months of ABX with no break - his tics are only increasing - he is now having a pretty extreme arm movement which I've never seen before.

 

I AM going to get the Cunningham test done. We had to wait due to the steroids unfortunately.

 

I really can't tell now if this is PANDAS or TS. I'm getting frustrated with all the different opinions. I mean, the doctors we've seen have really all been WONDERFUL and try to help, but are more opinions going to help? Do I keep trudging on with more and more doctors and more opinions?

 

Main question here at this point is - would you get more ABX? I know Augmentin is best, but he is allergic to it, so that is out. I am seriously thinking it may be best for us to try just NOT using any more for a while and see if it makes a difference. Is that the only way, besides hopefully the Cunningham test, to know if it's TS vs. PANDAS?

Shoot! I had a long reply and I just lost it! I'll try again...I did not have time to read all the replies so sorry if this is a repeat

I'm sorry to hear nothing seems to be working. I know you'd had many different opinions but since no one seems to have hit the nail on the head in terms of finding a successful treatment (it doesn't really matter what you call it as long as you find a way to make it better), I would seek another opinion, another game plan. Have you tried Dr. L and/or Dr. B?

Other things to look at

When he was on abxs, were they full strength?

Have you look into food allergies and/or other gut problems?

Since Augmentin is out, could you try a combination of other antibiotics (like they do for Lyme?)

Do you know where the source of strep is? As in, have you check sinuses, gut, tonsils, etc?

Has he been tested for Lyme?

Do you have a dog, was it treated?

Have you checked all family members?

Again, I apologize for not being able to keep everyone's story straight!!!

 

If you are considering stopping abx (and I would too if they did not help), you could try natural antibiotics like Olive Leaf Extract, Oil of Oregano, etc.

 

Hope I'm not confusing you more!

 

Isabel

Edited September 15, 2010 by mati's mom

[Tamistwins]

We have had all of the immune and antibody panels done. I'm amazed my son has any blood left!! There is no other infection - no mycoplasma, no lyme, no pneumococcal... His ASO titer came down slowly and steadily. I had the immuno throw a new one on there when she did the last allergy blood test - just to see since he has been getting worse again. It was low.

 

We see Dr. T so we've had all of his bloodwork and then some from our immunologist and various other doctors along the way.

 

He actually has weathered the abx VERY well. Surprising!! The only issue he had was vomitting from the Biaxin, but he did get used to it after a few days. Really shocked me since I can barely handle an ABX myself.

 

Immuno wanted to do IVIG but insurance flat out said NO WAY NO HOW! They actually have PANDAS on their list for things they will NOT do it for. Of course, it is a known no-no for TS and since he has that DX as well, that didn't help the cause. PLUS failing the steroid "test". We got a case manager with the insurance company who says she is willing to do all she can to fight for IVIG but is being realistic and based on whats done so far, it won't happen. Also tried based on his subclass deficiency, but wouldn't fly.

 

I emailed Cunningham again today and requested the test. She had answered me last month, but it was too soon after his steroids.

 

I guess what I'm thinking is - if I do a REAL trial with no ABX and he really does go downhill, I'll know its pandas and not TS. If he continues to float along at the level he's at without them, then it's more likely TS.

 

Hi Tantrums,

I am so sorry for what you are going through. I know it is so frustrating and we feel helpless. My son tried a bunch of antibiotics too have you tried zithromax, this seems to be one that worked for us.

[tantrums]

You must've been posting the same time as me Kim. We've had ALL that bloodwork testing done. Every single thing has been checked out. The allergist did skin, found nothing and then went to blood. Poor kid! Dr. T did one huge bloodwork order - 8 vials! And when that showed nothing did another, which was also fine.

 

The doctor at CHOP recommended YALE. Has anyone gone there? My only issue, aside from the fact that car rides are ###### with this child and it's about 6 hours away, is from looking at their site, they are all about follow up and follow through. I can't be going there every month. I do periodically look into it. UMDNJ is my last local shot I think - have that appt in three weeks.

 

He had his tonsils out when he was 3 so thats not an option here either.

[matis_mom]

Oh, I forgot to say about the Cunnigham test. To me, it really doesn't matter what you call it as long as you find an effective treatment. If kind of depends on your situation too. If I only had $400 and had to choose between a] Cunningham, b] seek second opinion, or c] do Igenex, I would probably do either b or c. But that's just my personal take, I'm more interested in effective treatment than in diagnosis, and my $ are limited.

[justinekno]

Is Yale open to things like PANDAS and Lyme?

 

Is Yale a reasonable option for you (as far as time / money/ travel, etc)? Keep us posted!

[philamom]

Did you have the Streptococcus Pneumonaie Serotype test done? In my daughter's case it was the 14 Serotype. I know you said you had all testing done--but wanted to double check on this one?

Also, in one of my daughter's earlier episodes, the antibiotic Duricef (ceph.) put her in remission.

[tantrums]

Did you have the Streptococcus Pneumonaie Serotype test done? In my daughter's case it was the 14 Serotype. I know you said you had all testing done--but wanted to double check on this one?

Also, in one of my daughter's earlier episodes, the antibiotic Duricef (ceph.) put her in remission.

 

Yep - that one too and all was fine.