Feeling really frustrated..

[Pudgeo]

Hello and I am open to suggestions from the rest of you whose kids are dealing with PANDAS. I feel like I have tried everything..supplements/diet changes/ 3 IVIG/ anti-virals/antibiotics and now meds suggested by the Amen clinic and my son is a zombie this week. He has been waking up alot at night which I believe is from the neurontin. I started him on the amantidine which is supposed to raise dopamine levels and like I said my son is a spacey/zombie this week. So I've just had it with everything!!

I ordered something called Epicor from VRP? Has anyone ever tried this? It's supposed to modulate the immune system.

He was much worse on supplements like co-q-10, anything which is supposed to help the brain seemed like it made him worse!!

Thanks, Sarah

[peglem]

Oh Sarah, I'm so sorry your child and you are having such a rough time. I don't really have good suggestions, but I've been where you are now...tried everything that may work, worked for others, shoulda worked and so confused and frustrated. We saw tons of specialists which gave us conflicting reports. Couldn't even tell anymore which symptoms were disorder and which were side affects. I got to the point where I considered just giving up...my child's pediatrician wouldn't let me! I did kinda take a break from my frantic, relentless search for answers. Taking things slower now. Sure would like an overnight cure, but have settled for small increments of improvement, tweaking things when we get regression.

[Pudgeo]

Thanks..I am feeling frustrated because now my son does not want to go to school..which is a symptom we had in the beginning of all this! So now we've come full circle back! aaargh! I feel like we take 2 steps forward and then 1 or 2 back! No improvements seem to stick..I just don't get it..He'll have good days where we get glimpses that he's still in there and then some days he's a walking zombie. I feel like the anxiety just eats him up inside and he can't relax and be himself.

THanks for letting me vent!!! Sarah

[peglem]

Thanks..I am feeling frustrated because now my son does not want to go to school..which is a symptom we had in the beginning of all this! So now we've come full circle back! aaargh! I feel like we take 2 steps forward and then 1 or 2 back! No improvements seem to stick..I just don't get it..He'll have good days where we get glimpses that he's still in there and then some days he's a walking zombie. I feel like the anxiety just eats him up inside and he can't relax and be himself.

THanks for letting me vent!!! Sarah

 

I think the most useful thing we have for anxiety is (sorry, I don't like using it either) diazepam (valium). I don't use it everyday, can frequently substitute valerian root for it, but when she's really disturbingly overanxious (she has SIBs) there just doesn't seem to be another solution. I console myself with the fact that I've saved her and the whole family a day of misery. It takes a TON of the stuff to sedate her and make her whoozy (the dentist prescribes that amount when he sees her). The amount we give her just keeps her from gnawing her arm off. Sometimes she'll have really great days...and I'll drive myself crazy trying to figure out why...so I can replicate it!

 

Glad you feel comfortable venting here!

[EAMom]

Hi Sarah,

I wonder if it would do any good to call Dr. K? B/c weren't they still thinking your son is PANDAS? Also, I know he has a very high sucess rate with his IVIG...maybe there is something about the particular brand/product that he uses that makes it better?

Also, did your son do the steroid burst before the original IVIGs? Did he respond to the steroids?

[Caryn]

Sarah,

Could you give a little more detail about the diet and supps you have tried so far? Also, what tests have you done and what dx did you get? Also, what kinds of symptoms are you seeing mostly? What in your opinion seemed to help the most? Least?

Caryn

[Pudgeo]

Sarah,

Could you give a little more detail about the diet and supps you have tried so far? Also, what tests have you done and what dx did you get? Also, what kinds of symptoms are you seeing mostly? What in your opinion seemed to help the most? Least?

Caryn

HI, We have taken him off dairy but he only tested sensitive to dairy/eggs/P.B. He eats mostly organic..nothing processed.

He did test high for lead/arsenic which can wreck havoc on the immune system..

I have done chelation on & off since the summer. I will say he seemed to regain some of his conversational skills with that.I am doing IV chelation with him 4X next month. At home I follow the Cutler protocal and I have to wake him up at night to give him DMSA/ALA

I did have a phone consult with Dr K a few months ago and my pedi spoke to him too..Dr K felt IVIG was my answer and I would see results soon...

2 Dr have told me an encelphalitis type disorder which is not a good thing (hard to treat)

I am tempted to start azith again since when he was having good days it was when he was on that(yuck, more meds!)

THe only thing that seems to help is ativan and I put him on a low dose of dexadrine to concentrate at school.

As for supps..I did transfer factor to modulate immune system, and tried just about everything and I will say when I had him on alot of supps he was worse than now. SO now I am just doing a good multi-vitamin powder (kirkman spectrum complete) and that seems to be OK.he was fighting me alot on the supps so I had to minimize.I just started the epicor so we'll see about that..

I ordered HBOT which I am picking up on Friday to start hopefully 2x a day. THe Dr at the Amen Clinic felt this was really important so he convinced me to go for it..

I know every kid is different and what works for one will not another..Sometimes I think my son went so long mis-diagnosed that it is harder to get rid of this!! Sarah

[Caryn]

Sarah,

I can't help you much with the Pandas info. I will leave that to other folks with more hands on experience. I assume your allergy test was either an IgE or IgG test? I'm not sure if you read my post about HCL, but if you feel like you are running in circles after a while maybe you may want to read it and see if it may apply to your situation. I just bought Suzanne Somers book today and will be reading it tonight, so I haven't any additional info to add other than what I have already posted. The theory is that low stomach acid might cause typical American dietary foods to pass through the system only partially or undigested (as our diet is highly acidic), thus causing chronic bacterial and viral infections and nutrient imbalances. I've no personal knowledge about it yet, but am looking at this theory closely because it can cause multiple allergies, and this is what we are currently dealing with in our situation. The diet has done wonders for our son but my feeling is that if the crux of the problem has to do with low stomach acid, then maybe our son's diet can include more foods without increasing his symptoms (which is currently what happens). Anyway, there is a correlation with bacterial overgrowth with h-pylori and strep.

Another thing you may want to research is the problem of lectins. Kim recently posted a link and I forwarded it to my celiac group. The group's moderator was very intrigued and said that there are loads of people who have broken off from the celiac sprue association. Many celiacs do not do well on a gluten free diet--- they need to remove other foods as well for wellbeing. This is how the lectin theory fits in.

 

My HCL link: http://www.latitudes.org/forums/index.php?showtopic=3836

 

Kim's lectin link: http://www.bmj.com/cgi/content/full/318/7190/1023

 

An additional link about lectins from my celiac group moderator: http://www.krispin.com/lectin.html

 

Sometimes it is good to 'think outside the box' so to speak. I understand the frustration when you are doing something and it doesn't appear to be working. Don't give up and realize that you are your child's best advocate and this may mean doing a lot of documenting at home for a while to see if you can find correlations on your own. I learned the hard way a long time ago not to put all my stock in what the doctor says. I have a high degree of respect for doctors but also realize that at the end of the day they are not the ones that are dealing with the disease on a daily basis. The best doc I ever encountered had a son with Autism and just 'got it'. He was very forward thinking and open minded to all my research and personal findings.

[patty]

Sarah,

 

I understand your frustration.

 

My protocol for my son is allergy desensitization. And i have come to understand why something works for some and not for others, because when one is sensitive to it, it will either have no effect or negative side effects. For incident, fish oil is beneficial for neuro development, however, when my son take it, it causes him to tic. Once the fish oil is treated, the tic goes too.

 

Also, when you are sensitive to something, you are also deficient. It is like a catch 22. To get around it, you have to desensitize yourself from it then supplement with to fill the void.

 

I think this explains why your son is not finding anything that works for him. I have found success thru NAET & Bioset. You may want to consider allergy desensitization then supplement to get maximum benefit.

 

Good luck!

 

Pat