Terribly frustrated, angry & hopeless

[michele]

I know we were at the low end range for PANDAS (still in the pandas range)but still it is frustrating because we have every single symptom and criteria for PANDAS and have had so many repeat waxing and waning episodes after strep and virals. When I keep hearing so many here who get the IVIG and PEX after one episode and we have had so many of these episodes it is really difficult to understand. So what are we to do now? Like in the past wait and see for the next infection to hit! Oh goody winter is around he corner and now we are antibiotic free! I couldn't keep giving it with the bowel irritation.

 

Michelle, I really feel that Dr. Latimer's hands were tied in your situation. B/C your son's Cunningham tests were equivocal (the low end of the PANDAS range which has a lot of overlap with non-PANDAS values) combined with a non-response to steroids, your situation wasn't clear cut and it would have been irresponsible for her to recommend going ahead with IVIG or PEX.

 

On the other hand, I personally still feel that you would have little to lose with a 2 mo. trial of Azithromycin. I would say that is one qualm I have with both Dr. Latimer and Dr. K. is that they are both too reluctant to use Azithromycin (at good doses). Dr. K. seems to prefer Augmentin and Dr. Latimer likes (?? pen). Many cases on this forum respond better to Azithromycin than other antibiotics, probably b/c it gets intracellular strep and is immune-modulating. I think esp. with pen, I think it is too easy to have it not be clinically effective against strep that might be hiding out in the body (sinuses etc.) I post this link a lot, but will post again for Addi. http://www.entrepreneur.com/tradejournals/.../169459644.html

 

BTW I believe that T.Mom (I hope this is okay to say) spoke with Sammy's dr. Her impression was that she was not really that up to date on the latest info/research, but might be willing to learn.

[KeithandElizabeth]

Michele:

 

Have you ever done the immunological work up? Especially with the pneumonaie titiers? I am just thinking that if your son is deficient in any of these titers, your insurance would possibly cover IVIG.

 

Elizabeth

[michele]

His titers were elevated at one time after a strep infection. They were only checked a few times and that was years ago.

Michele:

 

Have you ever done the immunological work up? Especially with the pneumonaie titiers? I am just thinking that if your son is deficient in any of these titers, your insurance would possibly cover IVIG.

 

Elizabeth

[ShaesMom]

His titers were elevated at one time after a strep infection. They were only checked a few times and that was years ago.

Michele:

 

Have you ever done the immunological work up? Especially with the pneumonaie titiers? I am just thinking that if your son is deficient in any of these titers, your insurance would possibly cover IVIG.

 

Elizabeth

 

 

Michele-

 

Those titers that you are talking about being elevated are NOT the same thing as having the Immunological work up done that Elizabeth is talking about. She is referring to having his IGG, IGA, IGM, IGG subclasses, Pneumonococcal titers, Diptheria & tetanus titers done.

[EAMom]

Michele, was your son on psych. drugs when you did the burst? Dr. K. (I think) likes kids weaned off psych. drugs for a steroid burst.

 

If your son does have a big exacerbation off of antibiotics sometime this year, it would be reasonable to repeat Dr. Cunningham's test at that time. My dd's CaM kinase ll was 70 points higher during an exacerbation.

 

Would you say that things are worse since you've stopped the antibiotics?

 

Has being off the antibiotics helped his bowel situation? If not, perhaps that wasn't the cause of the problem?

[michele]

His bowels are getting better. Still some soiling but not the constipation issues or the struggling to get it out. So far he is seeming slightly improved in his moods since adding risperdal end of Aug. At least not as raged since we upped to 1 mg 2x a day. We still struggle with his opposition and ADHD and anxiety. He was on Abilify during the burst. I will repeat with Cunningham if he gets worse again. At what point did you test with Cunningham? Andrew came down with illness on a Fri. June 5th and we tested on a Mon. Maybe it was too soon for them to elevate. His symptoms went on all summer and things just kept getting worse during the steroids and the rage was horrible. Two holes in the wall, broken picture frames, threatening and spitting and kicking and hitting. We have been seeing several behaviorist to get him straightened around. I think we must have given into his tantrums a couple times because now he must test to see if he can get his way! Everything has become a fight.

 

[quote name='EAMom' date='Sep 26 2009, 01:41 PM' post='393

Michele, was your son on psych. drugs when you did the burst? Dr. K. (I think) likes kids weaned off psych. drugs for a steroid burst.

 

If your son does have a big exacerbation off of antibiotics sometime this year, it would be reasonable to repeat Dr. Cunningham's test at that time. My dd's CaM kinase ll was 70 points higher during an exacerbation.

 

Would you say that things are worse since you've stopped the antibiotics?

 

Has being off the antibiotics helped his bowel situation? If not, perhaps that wasn't the cause of the problem?

[Kayanne]

Kayanne, we used to live in Sinking Spring -- where are you guys? Thanks for the help!

 

We live in spring township...it's a small world, we used to be neighbors

 

~Karen

[L Haven]

Addi, just keep going - get a second opinion. We've had similar experiences. Is there another major hospital near you? Where else can you go? Have you tried emailing or calling NIMH for a referral? They actually responded quickly to our questions, but that was in 2003.

 

I know how heart-breaking and scary it is to think of your sweet child on medications like Respiridone. It seems to help some kids, and not help others. My son's symptoms got worse with Clonidine. We finally tried the "new" recommended PANDAS medications (the older med-approach was just sedating, or using anti-anxiety drugs). Orap helps with the lability and tics and fears, but my son keeps having to use higher and higher doses. Remember that you don't have to commit to a drug; you can an always do a brief trial to see if it helps. A good question for a doc recommending a treatment is, "How many children with PANDAS have you treated with that medication, and what percentage of them did it help?"

 

About school: My 4th grader missed 4 1/2 months of school. In our district, public schools must provide a tutor who comes to your home free of charge. Is there any policy like that where you live? It took a lot of phone calls, and even educating the school guidance counselor about the policy, but we got it. Very best wishes to you!

Lena

[T_Mom]

Addi, just keep going - get a second opinion. We've had similar experiences. Is there another major hospital near you? Where else can you go? Have you tried emailing or calling NIMH for a referral? They actually responded quickly to our questions, but that was in 2003.

 

I know how heart-breaking and scary it is to think of your sweet child on medications like Respiridone. It seems to help some kids, and not help others. My son's symptoms got worse with Clonidine. We finally tried the "new" recommended PANDAS medications (the older med-approach was just sedating, or using anti-anxiety drugs). Orap helps with the lability and tics and fears, but my son keeps having to use higher and higher doses. Remember that you don't have to commit to a drug; you can an always do a brief trial to see if it helps. A good question for a doc recommending a treatment is, "How many children with PANDAS have you treated with that medication, and what percentage of them did it help?"

 

About school: My 4th grader missed 4 1/2 months of school. In our district, public schools must provide a tutor who comes to your home free of charge. Is there any policy like that where you live? It took a lot of phone calls, and even educating the school guidance counselor about the policy, but we got it. Very best wishes to you!

Lena

 

Hi Lena, what are the "new" recommended Ps medications and who has recommended them? Thanks--

TMom

[pixiesmommy]

I just wanted to add this-

 

Don't beat yourself up about giving in to tantrums. We NEVER have given in during a rage and she continues to do it. Consequences and rewards don't matter when she is so inside herself and has to have that release or whatever it is.

 

Hugs,

Manda

[smartyjones]

His symptoms went on all summer and things just kept getting worse during the steroids and the rage was horrible. Two holes in the wall, broken picture frames, threatening and spitting and kicking and hitting. We have been seeing several behaviorist to get him straightened around. I think we must have given into his tantrums a couple times because now he must test to see if he can get his way! Everything has become a fight.

 

 

I've found the book The Explosive Child by Ross - or Russ - Greene very helpful. It leapt out at me one day when we were at the library and I was thinking, 'there's got to be a better way' after we'd had a horrible tantrum the day before. We were leaving my mom's and my son was opening the car door as I was driving. I stopped the car, pulled him out and sat with my arms and legs around him until he calmed down - all with a postman watching wondering if he should call 911.

 

I don't really refer to Danny's tantrums as rages b/c he's not really angry - just extremely upset. The book gave me some good practical advice on what to do and say and it works for us. Previously, I was getting dragged into it with him and I'd feel myself wound up too. Sometimes, sending him to his room and holding the door until he could calm down. I didn't like this and it didn't work - I didn't know what else to do. I knew it would be better if I didn't engage with him, I just didn't know how.

 

Currently, he will still freak out about things. We just have a better way of interacting with him rather than feeling like the only choices are to let him have his way or stand our ground strongly.