So Frustrated

[lmkmip67]

She is so convinced Ian has OCD, Tourettes, ADHD, ODD, sleep disorder of some sort, and a learning disability but that isn't PANDAS. She won't say she doesn't believe in it, but I know she doesn't. I told her about the IVIG treatments and gave her a copy of all the labs, Dr. Bs notes, etc. She couldn't answer if tourettes comes and goes for months at a time and flairs with illness. She suggested therapy for the OCD, until I reminder her gently that the counselor she suggested last year told us she couldn't help us after about 6 appointments because "something" else was going. She felt something truly medical was causing this and said it didn't act like true OCD. Yet here we are a year later and Ian is not improved after a year of antibiotics and 3 IVIG treatments. Maybe I am the one that is crazy.

 

On the Lyme front Dr. B won't give anything until we get a positive test result, so really suggests retesting. I am inclined to just do it and make an appointment with a LLMD. I guess we will go for IVIG #4 this coming month. I feel lost, honestly. Should I be pursuing an infectious disease doctor too? I guess I will start making a list of questions for Dr. B at the next IVIG appointment. I want so much to help my son, but sometimes I feel like I am spending so much money on nothing that works. Some days I will admit even I start to doubt. Why do Lyme doctors not take insurance? Why are giving out names in forums so hush hush and always done via PM? Why is it so hard to find one? If it was relevant it seems to me it should be more widely accepted. I don't know. I realize I am just frustrated today and not sure where to turn. My pediatrician is obviously not the place. She wants us to see a neurologist/psychiatrist. Not saying I am not open to that, but last time we tried we were pushed out over 6 months. I am sorry to whine, I am feeling very lost and confused. My poor kid had to get the hep vaccine today and spent the whole appointment worrying about it asking the doctor the same question over and over again. His life is ruled by fear.

[Familyof5]

I know the feeling well. Another option to look into is whether mold/environmental toxins are your trigger for illness. It turned out to be the case for all my kids. They could have all been dx lyme, pandas, tourettes, ADD, OCD, etc. And, they did have a little bit of all of that, but it was caused from their toxic mold exposure. After removing exposure, treating their illness, they are a lot better and I finally have the feeling that something I am doing is making my children heal. It has been a very slow process (2 years in the making), but along the way I felt we were gaining 2 steps forward for every one step back. Recently, the gains are more like 5 steps forward, 1 step back. I feel positive that they may actually live a normal life someday. Look into mold--it is easier and cheaper to rule it out--you have control over your environment. Maybe there is mold at school, maybe in your duct work, maybe your basement, it is a nasty, nasty cause of illness that many people don't take serious.

 

Check out this website for more information:

 

http://www.survivingmold.com/

[nevergiveup]

Please do not knee jerk to the next feedback you receive. Stay the course with ivig, my child took two years for us to finally rest a little, still recovering. Trust your doc, is Dr. B saying you should go look elsewhere. I know it is soooo hard not to knee jerk, but sometimes healing takes longer, strokes, encephalitis, ms, head trauma can take years to recover. Lupus when treated with ivig, doctors do not see a benefit from neuropsych symptoms for at leat 6 months of ivig. If you see him declining I would be concerned and maybe look elsewhere but otherwise stay the course for now.

[lmkmip67]

Thanks! I won't make a knee jerk reaction. But even Dr. B said we should see more improvement than we have. Well, really, we haven't seen any. I have to be honest. We had a little after the first treatment, then just went downhill. He suggested retesting out inconclusive bands on Igenex so I guess that is the next step. I almost hope Ian is positive for Lyme this time. At least I would be able to say, ok, lets treat this. I feel now like I am just guessing. So the plan is to make an appointment with an LLMD, retest those bands, and go from there. We will be doing the 4th IVIG later this month. I question why, but we will do it. I was just so frustrated when I asked his pediatrician today, if he has all of these which one would you chose to medicate? She couldn't answer me. Of course I was being wise and she knew it. I refuse to medicate my kid on those drugs. There is something causing this.

[JAG10]

Lisa,

 

We did the drugs, in multiple brands, doses and combinations. I won't say none of them helped one iota, they did some, then made other symptoms worse... Your exact point. How do you treat an unfortunate, unlucky child who happens to be plagued with every psychiatric diagnosis you can think of before they have a double digit birthday???

 

With all due respect, your ped is of little use to you. Peds are for vaccines and ear infections. BTW, why did he get the Hep B vaccine? Didn't Dr B say NO vaccines? It's so hard to go to those appointments you know will be useless. We spent some dark, helpless, hopeless years wondering if our dd was unlucky enough to be hit with multiple psych dx. Hogwash!!!! Where did all the dx go??? Lisa, we started treatment with abx in Feb 2010, steroid test in March, first ivig in May. It wasn't until Feb 2011 for ivig #2 and they have been steady ivig's since. Now, there have been immune challenges since then that have muddied the waters and sent Dr B searching around Lyme again. I'm not saying your son's INDs are nothing; just Lyme was not an issue for us. But my dd is asymptomatic to many infections and mildly symptomatic to virus. Me? I'm on my back sick, and she barely sniffles. BEHAVIORS are the coughs, sniffles and sore throats of normal kids!!!!! This is confirmed by having two pandas in the house. Behaviors need to be slammed down with full dose abx. NGU is absolutely wise and right!!! It takes time, but they get better and better. Aug-Sept-Oct are awful for our kids between strep and viruses. I just got another call from the nurse tonight; EBV in her grade and chicken pox in 7th grade. It's a landmind. The consistent flow of passive immunity from ivig will take time to allow for healing.

 

What abx is your son taking now?

I hate ped visits. Complete waste of time. Betty Crocker medicine.

[dcmom]

Imkmip67-

 

I am so sorry for what you and your family are going through. The uncertainty is the worst.

 

I would imagine your best option is to do a few things at a time. First, I would not even include your pediatrician in any of this- frankly, this goes way beyond the scope of a ped, and most likely they would just give you bad advice I guess I would stay the course with Dr B a little longer, especially if he is willing to look at other causes, while also trying to treat pandas. There is no reason not to simultaneously consult an llmd and a biomedical (DAN) doc, for some different, out of the box, type approaches. I would go down these paths with an open, yet somewhat skeptical mind (if that makes sense).

 

I also think, while you are looking for answers, it is okay (no maybe very important) to treat the symptoms to give your child some relief, if possible. I am a huge believer in aggressive medical intervention being the best and most sensible treatment for pandas. Yet, if you are not getting relief, I think you should open your mind to looking for relief from other sources. It is not an either/ or scenario- you can do both things at the same time. Medication and therapy can be temporary band aids that could really increase the quality of life.

 

My daughters have pandas. By far, medical treatment has been our main focus, and we have gotten great results. Yet at the same time, this summer we decided to go more intense with therapy- and it was the greatest experience. We did a 3 wk ocd intensive, which gave my kids the tools, and some success, to help them now and hopefully in the future. We also addressed some defiance while we were there, that was a by product of accommodation we had slipped into due to the panic/ocd. The therapy really gave us our power back as parents, and also helped us further our understanding of the ocd. It is not a magic bullet, but it has been life changing.

 

We tried low dose zoloft for one daughter this spring. Unfortunately, It didn't do anything. At the time, she really needed something to just take the edge off the anxiety, so she could confront the ocd. It didn't help, and it didn't hurt. Had it helped, we would have used it as a temporary measure to help her with her therapy. She doesn't need anything right now, as things are going well- but if we have issues in the future we will consider low dose prozac.

 

I talked to a good friend recently, who has one child with ODD and one with anxiety. She recently started them both on prozac, after a few years of trying many other types of intervention. She told me she cannot believe the change for the positive.

 

I wish you the best of luck with your decisions....

[lmkmip67]

Ian is on Augmentin right now 600mg twice a day. Full treatment dose, I am told. I had not heard no vaccines from Dr. B so didn't think anything of it. I do think your right about the pediatrician. I just really can't count on her being useful at all here.

[JAG10]

Has he always only been on Augmentin? Can he take Zithromax?

 

I don't know why he never mentioned vaccines. I remember during our initial consult with him Nov 2010, there were signs ALL OVER his office to get a flu shot. But he clearly said NO vaccines for either of my girls. I'm not saying it is "do or die" as I don't recall my girls having any adverse reactions to vaccines. But the idea is you are trying to get the immune system to chill-out and the vaccines get it all rammy again.

 

When do you go back? We'll be there Oct 26-27 (wed-Thurs).

[AmySLP]

We were told no vaccines for now either. My daughter never had her booster of MMR & another before Kindergarten due to this & her titers fell short, showing she needed them. I never get her the flu shot either for this reason.

[lmkmip67]

Ian can't get the flu shot anyway because of an egg allergy. so I don't worry about that one. But I question not getting his regular ones for school, I don't know. Well, he got the one and I will have to get the second booster in 6 months. I think that is it.

 

He has been on Zithromax before, yes. And a combo of that and Omnicef. so we have tried a few.