New Here -- Mom to 3 PANDAS kids, ages 15, 10, 6

[flamom]

Hi All,

 

I am new to this forum and have 3 children diagnosed with PANDAS/PANS-- DS15, DD10, and newly diagnosed DD6. Of the three, only DD10 has seen improvement with antibiotics. DS15 has been struggling since Jan. 2012, head and neck tics are indescribable, panic attacks, and OCD. Makes going to school very challenging. DD6 was diagnosed this past year, and we thought we were managing tics with antibiotics, as they were subtle and infrequent. She has ongoing severe separation anxiety. A few weeks ago, however, she too developed awful head and neck rolling tics.

 

We see a direct correlation between gluten and dairy and DD6's tics, and have changed her diet. Lately, however, she is still ticcing shortly after eating even processed "gluten free" foods, so I am confused (unless they are cross-contaminated, as she has a peanut and flax allergy as well). Problem with all of my kids seems to be Mycoplasma. We cannot eradicate it from my house. I am beginning to wonder if my dog might even have it:)!

 

Does anyone else have multiple children with PANS/PANDAS, rooted in Mycoplasma? If so, do your children have similar tics? And have you had any success in treating it?

 

Many thanks for any responses. And best wishes to all here for speedy recovery.

 

 

[Chemar]

Hi and welcome

 

Just bumping your new post up so others can reply

[flamom]

Thank you Chemar:)

[rowingmom]

Are you seeing one of the PANS specialists and receiving treatment? Are you sure you are only dealing with mycoplasma? Mycoplasma infections are often associated with lyme and the other coinfections, bartonella, babesia, ehrlichia, anaplasma.

 

I would suggest finding an ILADS-associated LLMD and at least do some lyme/coinfection testing.

 

I found that DD's tics were associated with toxin buildup from die-off, produced either by her immune system (ie, after and infection we would see ramping) or by abx treatment (increased ticcing with changing/increasing abx protocols). I suppose you could assume this would apply to the build-up of untolerated ingredients in food as well.

 

We only have one effected child (DD12). Our 17 yo son doesn't have PANS, so I can't comment on multiple siblings.

[flamom]

Thanks so much for your reply, Rowingmom. DS15 was evaluated by Dr. J in CT (LLMD) shortly after onset of PANDAS symptoms. Lyme, etc. was ruled out, although your reply concerns me b/c DS15 was bit by tics multiple times prior to PANDAS diagnosis. I do not recall DS6 being bit by a tic, however.

 

We definitely do see an increase in tics associated with toxin buildup from die-off, as evidenced last week when we were treating with DS15 with Byron White A-Myco drops. Had to stop treating when we saw a definite flare in all of his symptoms.

 

All children are currently being seen by specialists, but unfortunately no one has been able to diminish my son's (DS15) symptoms since his diagnosis in Jan. 2012. Now I am so fearful to see the same symptoms in my daughter (DS6).

[pr40]

did anyone suggest IVIG for your ds15? did you try steroids?

is he on gluten and dairy free diet?

did you do genetic test on him? given that he is a complex case, knowing his metyhilation mutations (23 and me does it for $99) might be helpful.

about DD6 -- what is a gluten free processed food? did you also exclude sugar?

depending on mutations she has, tics can be caused by some supplements. is she on any?

 

you got a dog and three PANDAS kids? -- we have a fish, i recommend it. at least you can exlude one potential source.

 

how about mold?

 

on myco: much has been done because Iraq war vets had myco caused chronic fatigue syndrom. if you think it is myco, you can follow the protocol established for them. google myco and iraq.

 

if you have questions about celiac, I have it and can try to answer.

best of luck

[flamom]

Thank you pr40. Yes, my son (DS 15) had 4 IVIG's-- the last 2 helped a lot, but only temporarily. I have just started him on a GF/DF diet, so keeping my fingers crossed that it will help him. He is very allergic to dogs, although our breed is supposedly hypoallergenic. I don't think we should keep it in light of our Pandas struggles, but try telling that to the kids:(

 

I just learned that he has a C677T and A1298C mutation, but haven't been told what to do about that. Have not done 23 and me yet, but sounds like I should.

 

By "GF processed food", I meant GF bread, cookies, nutrition bars, etc. I have not excluded sugar, as I am trying to make the GF/DF diet more palatable, and their other siblings are having sugar, which makes it twice as hard. I know it's far from ideal...

 

As for mold, I know that my son (DS 15) tests very high for mold allergy, but I am not aware of exposure. We do live in Florida, however. Thank you for the lead on myco, I will check it out.

 

I'm sorry about your celiac:( I am hoping to having testing done thru Cyrex to rule it out for DS and DD.

 

Thank you so much for your help.

[pr40]

on mutations you mention: it depends what your other mutations are. if kids don't have comt and cbs, you can give methyl donors like metyhlcobalamin b12, folinic acid, and so on.

personally, i would get rid of the dog. kids have to get on board and help with healing. unless they do that, it will be twice as difficult for you.

we tell them that sugar is poison for them which it is. we tell them that pet would be poison for them which it would be. and so we try to avoid these just as we would any other poison.

if your son had IVIG and it didn't work, perhaps you could contact some of the heavy guns like Dr. Sweedo or Dr. Leckman at Yale and see what they suggest.

gf ready-made food has too much sugar. you may want to think of gf diet in a different way. most Asian, Latin American, and African cooking is gf. they ought to offer something palatable. stevia seems to be a good substitute for sugar

[emst]

We have 3 kids w PANDAS if you ever want to PM me, they are all different. For Myco we generally increase antibiotics for 5 days then switch to Myco-Chord (Energetix) where if you don't habe a homeopath you have to find your dose, it's gentle. Our younger kids when they were small only took max 5 drops 2x day, the older one can take 10 now if she needs it but they don't need it so much any more. I think myco = weakness for us and we see it most when the kids are fighting multiple infections which for us is Jan-June.

 

I'll mention this because it was mentioned above our kids have always been gluten free or low gluten it really helps but now

we're doing very strict gluten eradication in the whole house because my son might be having gluten related seizures, fun never stops.

Hope it helps.

Erin