Getting Started

[dasu]

I am new to the world of neuropsychiatric disorders but like most folks here have it forced on them. So I have been reading through these forums and been having trouble putting information together - there is a pretty specialized vocabulary I am trying to learn.

 

My daughter is 4 years old with issues that may be PANDAS. A bit about her history: She had a rough start with GERD but afterwards recovered well and seemed to be a fairly typical girl until 2 years old about (not saying this caused it) the time our family came down with Mono. After that time she complained about a lot of stomach and body pains, she described it as a "pit in her throat, tummy and bottom" and also seemed more lethargic and less than happy. This went on for almost a year before the primary doc referred her to an allergist who discovered she is allergic to wheat (not gluten) and almonds. On starting the wheat and almond free diet her symptoms improved as did her energy and mood. However after a couple of months of this bliss she suddenly started acting autistic: she stopped looking at people, started rocking, stopped talking and playing with toys etc and regressed often acting like a baby. At about the same time we went to the doctor as none of our family was feeling well and tested positive for strep. Since that time she has recovered somewhat in that she talks and interacts with people, plays with toys and her brother and friends but now is extremely hyperactive, makes odd noises, has frequent tantrums and rages, and can be quite sensitive to touch. Oddly enough she can act OK when out of the home, although we have noticed that taking her to doctors and psychiatrists set her off.

 

She has since been to a pediatric psychiatrist who hasnt been able to diagnose anything as he says that this appears like bipolar but she is too young, as the primary issues started at 3 years of age.

 

So, does this sound like PANDAS? Or something else. But the bigger question is what is the next step. We have an appointment in a month with one of the PANDAS doctors, Dr Lattimer in MD. There is a LOT of information on this website about genetic tests and treatments based on the results - who coordinates/drives those tests? I have also noticed a strong connection to the Defeat Austism Now Doctors. Should she also see a DAN doctor? And in the mean time is there any recommended home-based protocol?

[Chemar]

Hi and welcome

I am bumping your post up so others here can reply

[mpsloan]

I am new to the world of neuropsychiatric disorders but like most folks here have it forced on them. So I have been reading through these forums and been having trouble putting information together - there is a pretty specialized vocabulary I am trying to learn.

 

My daughter is 4 years old with issues that may be PANDAS. A bit about her history: She had a rough start with GERD but afterwards recovered well and seemed to be a fairly typical girl until 2 years old about (not saying this caused it) the time our family came down with Mono. After that time she complained about a lot of stomach and body pains, she described it as a "pit in her throat, tummy and bottom" and also seemed more lethargic and less than happy. This went on for almost a year before the primary doc referred her to an allergist who discovered she is allergic to wheat (not gluten) and almonds. On starting the wheat and almond free diet her symptoms improved as did her energy and mood. However after a couple of months of this bliss she suddenly started acting autistic: she stopped looking at people, started rocking, stopped talking and playing with toys etc and regressed often acting like a baby. At about the same time we went to the doctor as none of our family was feeling well and tested positive for strep. Since that time she has recovered somewhat in that she talks and interacts with people, plays with toys and her brother and friends but now is extremely hyperactive, makes odd noises, has frequent tantrums and rages, and can be quite sensitive to touch. Oddly enough she can act OK when out of the home, although we have noticed that taking her to doctors and psychiatrists set her off.

 

She has since been to a pediatric psychiatrist who hasnt been able to diagnose anything as he says that this appears like bipolar but she is too young, as the primary issues started at 3 years of age.

 

So, does this sound like PANDAS? Or something else. But the bigger question is what is the next step. We have an appointment in a month with one of the PANDAS doctors, Dr Lattimer in MD. There is a LOT of information on this website about genetic tests and treatments based on the results - who coordinates/drives those tests? I have also noticed a strong connection to the Defeat Austism Now Doctors. Should she also see a DAN doctor? And in the mean time is there any recommended home-based protocol?

 

 

Hi, We see Dr. L. and she is great. After seeing her and getting diagnosis of P.A.N.D.A.S. Dr. L. strongly suggested IVIG treatment, Before we do that, I wanted to rule out co-infections other than strep- based on things I read on this forum. We took son 7 lyme dr. here in MD and he diagnosed him with Lyme, this seems to be my son's "trigger" for his symptoms of OCD. You are in good hands with Dr. L. She will take a very detailed history, it is helpful if you write it down.

 

My son would also show symtoms when others were sick or whenever there was strep around at all.

We may still do IVIG treatment with DR. L, however my son is responding to antibiotics so we, Lyme Dr. and Dr. L. agreed to see how he does for a few months and then revisit IVIG.

 

God bless you and your family as you figure all this out, it is truly a puzzle and as different as all our kids are, they seem to have a common thread on many things. This site has been a big help to me over the last 3 months (dx Jan).

[filinha1]

Welcome to the group. You may want to try to get an appointment with an LLMD, if you can get in to see one before seeing Dr. L. Many LLMD's are familiar with PANDAS protocols and can get you started with the requisite blood tests and perhaps a course of antibiotics to tide you over until you see Dr. L. , who tends to have a longer waiting list because she is so well known.

 

If your daughter has rages, you might try one of the NSAID's, like Ibuprofen, which with some children has a calming effect, because they decrease inflammation.

 

If you live within an hour's drive or so from Dr. L's practice and would like to try to see an LLMD, feel free to PM me and I'll give you some names.

 

Kindly,

 

Heather

[LNN]

Welcome to the forum. Dr L will do a very good job exploring Pandas with you. I have a lot of respect for her. As others have suggested, sometimes when you have Pandas and don't get remission the way you "should" it's also a good idea to test for chronic infections that are keeping the pot stirred up (lyme, mycoplasma, active viruses).

 

The genetics you see discussed on this board is part of a process called methylation. You can think of methylation as a kind of metabolism, where a group of about 3 dozen genes work in concert, "cooking" the raw ingredients you take in from food and supplements and convert them into forms your body needs to operate correctly. They do this by trading something called methyl groups, which is simply a carbon atom bound to three hydrogen atoms. By trading methyl groups, it's like passing a baton in a relay race. When you have a genetic "mutation" on one or more of these genes, the body doesn't perform properly and since some of the products "cooked" in this process are neurotransmitters like dopamine, serotonin and norepinephrin. Partially over or undercooked neurotransmitters can lead to mental health issues and autistic behaviors. It's one reason why, in addition to allergies, restrictions in the kinds of foods you eat can improve your health, because those eliminated foods might be high in something your body can't process well because it has too many or too few methyl groups and/or sulfur groups. Here's an article on how one (out of 3 dozen) genetic problems can cause bipolar behaviors: http://www.easytolovebut.com/?p=2782

 

Based on your description, it's possible that methylation issues are at least a part of her struggles. You might also find that viruses and heavy metals are also at play. I think starting with Dr L is a good first step. She'll help you explore the role of infection and if this is a part of your picture, it will help you feel a little less adrift. For some kids, simply eliminating the infection helps them gain remission. If not, then parents move on to explore lyme, metals, diet and methylation, among other issues. If this becomes true for you, then you may need to add an additional doctor (or several). An LLMD (lyme literate MD) can help explore many of these issues as can a DAN (Defeat Autism Now) doctor. But not all LLMDs and DANs are created equal and depending on where you live, members here can suggest options. It's one step at a time. But know that what you're doing is putting you on a path to getting to the root of problems and helping your daughter. So good for you!! It may take time, but with your approach, I believe you will get to the root of the problem and get your daughter back.

[pr40]

at the same time, you may want to continue monitoring food sensitivities.

In general, there are many things that can throw certain immune systems out of whack. Strep is only the most obvious of them. Once strep does it, then many of us found that viruses too can lead to an exacerbation. Then, we found that food sensitivity (gluten and dairy in our case), can be triggers.

So, all of these "fronts" (strep, viruses, methylation, food, and environment such as mold) may need to be monitored. We got to address one by one after we started abx and kids calmed down -- on abx, after about a week, our son looked at us in the eyes for the first time in who knows how long.

best of luck

[dasu]

Thanks all for the warm and helpful welcome. Its good to find some people who have experience operating outside the typical medical system. You all have been through some rough stuff! Who thought life would be like this when we were young?

 

I am glad to hear the positive comments on Dr L. It has been a long wait though. The suggestion on writing down a chronology of symptoms is good because it gets jumbled up easily and all the more so in a doctors office.

 

The Lyme connection is interesting. My dad is in his 70s and just started seeing Dr Bach in PA as he contracted Lyme last spring and has had increasing neurological issues after the hoi polloi physicians did not treat the infection adequately. We live in central VA (used to live in MD) so its long trip for us as we live in central VA about 1.5 hours from DC. I would be interested in more local Lymes doctors.

 

Thanks for the tip on NSAIDs. Do you administer as prophylactic or wait until those days or weeks when she is off? (We have noticed that there are cycles although they are irregular.)

 

The genetic root of this is also intriguing. Its is part of why we are thinking it may be bipolar as one of my sisters has two bipolar kids and my other sister has a daughter that is likely OCD. That seems to suggest a genetic component to me, ignorant as I am. On the flip side, no grandparents or parents have similar mental issues, except for depression but all of it fairly well managed. Anyways the methylation article and all the different new avenues it opened up sparked some thinking. The idea of tailored diets and supplements is fascinating.

 

A couple follow up questions...

 

Does anyone recommend a DAN doctor in VA? I looked up DAN doctors ...what about Erick Rydland?

 

Has anyone here tried counseling or therapy and has that been successful. I am skeptical on what a 4 year old will pick up but have heard good things regarding RDI for autism spectrum distorders.

 

My daughter has been on valerian to stabilize her mood and melatonin for sleep, when thats been elusive. Are there any special considerations for PANDAS patients for either?

 

Abx is antibiotics correct?

Edited March 24, 2013 by dasu

[pr40]

abx is antibiotics.

with supplements it is trial and error. Rule is go slowly and see if it works. Our dd9 is on melatonin, 1.5mg nightly. it helps her fall asleep. She's been on it for three months and we have not seen any bad effects. she was on valerian last year but I stopped that. Stabilizing mood for us has been a long process, after abx, better sleep, came CBT therapy because she seemed ready for it. so, over a long period of time, a year now, we have seen significant improvement and thinks he is ready for CBT

 

ds is 5 and he is too young for therapy. we do, however, apply what we learned from our dd's therapy to him. He seems to be at the place now when we can try this. WHen in exacerbation, we try not to expect much of him.

another thing we learned, and we leave in New England, is that parents need to become their children's doctor. This if for no other reason then because the condition is too complex and we have the best insight into what is going on.