Seeking Input About This Case History

[LNN]

We too use doctors who don't accept insurance. The reason is that they spend upward of 45 min with you and insurance will only compensate them for 20 min. They do however, give you the insurance claim form you can submit yourself and get partially reimbursed.

 

But IMO you get what you pay for. These issues are too complex and visits are too far apart (2-4 months apart for check-ins), to do things justice in 20 min.

 

Astrid - I'm in CT as well and can give you additional doctor names in the greater Hartford area if traveling is an issue. But none take insurance. While I haven't seen Dr O'Hara, if we weren't overbudget on medical bills already, I'd be in her waiting room in a heartbeat. You will save lots of time getting to the heart of the issue and spare your family from suffering and frustration with non-believing doctors by seeing an experienced doctor, even if you have to pay out of pocket and seek partial reimbursement from your insurance company.

 

On a separate note, you can google "trichlomania + n-acetylcysteine" (also known as NAC). NAC is an amino acid, a supplement widely available at your health food store or on amazon - that may hold promise for treating trich in some people.

Edited February 26, 2013 by LLM

[ThinkGutBacteria]

In the meantime, I'd try buying a liquid melatonin preparation (we use this one with great success http://www.iherb.com/Natrol-Melatonin-Liquid-1-mg-2-fl-oz-60-ml/5294) and give her only 1 dropperful (1 milliliter, or 0.25 mg melatonin) about 20 minutes before bed. I squirt it into my dd's blueberry tea with honey. I guarantee fixing her sleep will take some of the edge off of her anxiety. (I assume you've done common-sense things like no media of any kind an hour before bed, no caffeine after noon, etc.)

[mdmom]

astridrobi - First of all let me say that you are on the right path just by being a member of this forum. My advice: Read, read, read. I have learned so much from the other members here. When someone shares a therapy or med or doctor that might be useful, I try to gather all the info I can about suggested things from the internet.

 

Some other suggestions:

 

1)Keep a log of symptoms, interventions, etc.

2)Reassure your daughter that there are other children/teens out there struggling like her - if you think it would help, have her read some of the posts on this forum

3)Ditch your pediatrician. This is not the time to be convincing a doctor just to have a conversation about PANS/PANDAS. You need a doc that is already well-educated and can properly diagnose and treat. Consider building a team of docs like others have suggested. We get mostly what we need from our Lyme doc, who is an integrative doc.

4)Accept the fact that to access good help from a PANDAS/PANS specialist you will have to pay upfront (and hopefully get partially reimbursed from insurance). We have borrowed from our 401K in the past and this year we are taking a medical hardship withdrawal to pay medical bills. Our 15 year old (PANS/Lyme) son has no chance at a future if we don't treat aggressively now.

5) Take a deep breath and know that you are your daughter's best advocate and you will be driving her care as you seek help.

 

My son was diagnosed at age 13, a little later in the game than some children. But after 2+ years of treatment for multiple infections and now monthly IVIG, he is improving slowly. He was a big ball of aggression, anxiety, depression and had a diagnosis of high-functioning autism with no hope for a bright future before we started treatment. Now he smiles more, is more present in our family life his future looks much brighter thanks to the smart doc that we found.

 

Hang in there.

[astridrobi]

We too use doctors who don't accept insurance. The reason is that they spend upward of 45 min with you and insurance will only compensate them for 20 min. They do however, give you the insurance claim form you can submit yourself and get partially reimbursed.

 

But IMO you get what you pay for. These issues are too complex and visits are too far apart (2-4 months apart for check-ins), to do things justice in 20 min.

 

Astrid - I'm in CT as well and can give you additional doctor names in the greater Hartford area if traveling is an issue. But none take insurance. While I haven't seen Dr O'Hara, if we weren't overbudget on medical bills already, I'd be in her waiting room in a heartbeat. You will save lots of time getting to the heart of the issue and spare your family from suffering and frustration with non-believing doctors by seeing an experienced doctor, even if you have to pay out of pocket and seek partial reimbursement from your insurance company.

 

On a separate note, you can google "trichlomania + n-acetylcysteine" (also known as NAC). NAC is an amino acid, a supplement widely available at your health food store or on amazon - that may hold promise for treating trich in some people.

 

 

Right, I understand the whole "you get what you pay for" philosophy, but we also need a roof over our heads. ;-)

I JUST hit on the NAC study for trich yesterday and stopped at the health food store last night. She took a dose last night so here's hoping it'll be helpful.

Travel isn't too much of an issue, but would love some Hartford area resources if you wouldn't mind sharing some names.

I'm feeling so much more confident and a tiny bit of relief since finding this forum!

 

astrid

[Dedee]

Welcome to the forum. I am so sorry for your circumstances. You have gotten very good advice. If your daughter has had Myco P in the past and now having the symptoms you are describing then this is most likely PANS. You should absolutely do as the other posters are suggesting and invest in your daughters future by taking her to someone who specializes in this area. More than one specialist is even better. I know that is very hard to swallow this early in the game, but save yourself the time and heartache early on. We went through "financial denial" for a long time. Talked about how we couldn't afford it, blah, blah, blah. Then we sucked it up, sold some stuff, and did it. I'm not suggesting you are like us. Only telling you that in our experience it was worth the out of pocket we had to spend.

 

This is a horrible disease and it is so draining on the entire family. But it can get better with the right guidance and treatment. You are on the right track by being here. The next step is the right doctor. Keep us all updated. Best of luck.

 

Dedee

[airial95]

I would suggest calling Dr. B immediately. Since you're relatively local, tell them you'd like to get on the cancellation list, and call periodically to see if there are any, and you may be able to get in sooner. When we made our initial appointment - it was about a 2 month wait, but they called me 2x in that timeframe to see if we wanted a cancellation. Since we were flying up from FL - we couldn't make that happen. But you could. He is an immunologist and PANDAS specialist. Since you also have immune issues that you're dealing with - he may be a good choice.

 

I agree that keeping a log is HUGE!! Especially as you're trying new treatments and supplements. Also, try not to try to many new things at once. It makes it more difficult to see what is having postive/negative effects. Many of us have found relief for our children using Motrin - it's our wonder drug.

 

There is a FB group for kids/teens with PANDAS - it's a private group that the parents have to request for the kids to join so it's moderated and strangers can't get access. I don't have the specifics as my kids are too young for FB - but someone else may be able to point you in the right direction if she's interested.

[airial95]

Also - I don't remember who said it - but preparing a financial plan is helpful. When my son was dx 3 years ago - it was a major point of contention between my hubby and I. I couldn't understand why he didn't seem interested in all the research/information I was finding and sharing with him. Only to find out (months later - with the help of marriage counseling!!) that he had been arranging our finances to be able to pay for what ever medical costs may head our way without it bankrupting us. Turns out we were both engaged in our own ways. He figured I had the medical side covered so he'd find some other way to be useful.

 

But I would also continue to look for providers who take your insurance - Dr. B does take most insurance. If you can get good quality help without breaking the bank - it's better for everyone involved.

[3boysmom]

I would suggest calling Dr. B immediately. Since you're relatively local, tell them you'd like to get on the cancellation list, and call periodically to see if there are any, and you may be able to get in sooner. When we made our initial appointment - it was about a 2 month wait, but they called me 2x in that timeframe to see if we wanted a cancellation. Since we were flying up from FL - we couldn't make that happen. But you could. He is an immunologist and PANDAS specialist. Since you also have immune issues that you're dealing with - he may be a good choice.

 

I agree that keeping a log is HUGE!! Especially as you're trying new treatments and supplements. Also, try not to try to many new things at once. It makes it more difficult to see what is having postive/negative effects. Many of us have found relief for our children using Motrin - it's our wonder drug.

 

There is a FB group for kids/teens with PANDAS - it's a private group that the parents have to request for the kids to join so it's moderated and strangers can't get access. I don't have the specifics as my kids are too young for FB - but someone else may be able to point you in the right direction if she's interested.

 

 

Really? I did not know about the teens with PANS on FB. OUr DS13 does not have FB, but is lonely and I think it would help if he could communicate with other kids his age about going through this mess. I wonder how we can find out about it?

Linda

[airial95]

I think some kids post on there through their parents account too. Like I said, mine are way too young for that - but if you do a search on Facebook, I'm sure you'll come across it. It's a closed group - so you have to ask to be included, and then the adminstators will vet you to make sure you really are a PANDAS kid/parent and not some creeper.

[astridrobi]

WE have an appointment with Dr. Bouboulis for September 2. That seems so very far away, and we are so very desperate for help. Sigh. (sob)

I'll keep calling back for a cancellation and make anything work.

 

She saw her original allergist who did the bloodwork in 8th grade; he was very open and receptive to dealing with it, and is sending her for more bloodwork including a full thyroid, lyme, lupus, etc. We'll see how that turns out.

 

Her anxiety seems mainly to be in school, and now the school wants to put her on a 504 plan. I'm wondering about just pulling her out to homeschool her again, but she doesn't seem to want that. She's in the band and choir, as well as the swim team, and it's hard for her to give up the things that make her feel good about herself.

 

In the meantime, I guess we'll just keep on keepin' on. It's so very difficult, but I don't need to tell any of you that. I feel if we could just get a handle on this hair pulling we'd be in better shape.

 

Thanks for listening

astrid

[dut]

Apologies if this has already been suggested or you are already doing this but, for my 2 PANDAS kids, ibuprofen is an absolute godsend. It has kept my dd in school through her latest flare (anxiety, ticcing, school refusal) and has kept me from strangling my ds in his latest flare (aggression, rage, impulsivity, hyper).

 

We do full dosing 3 times a day and get a fairly instant lowering in symptoms. It doesn't work for all kids and some can't tolerate it but it is worth a try if your dd can tolerate inbuprofen and is willing to try it.....

 

I think that for my kids it even shortens the duration of their flares.... perhaps a positive feedback loop in lowering inflammation and a nice knock on effect for the blood brain barrier, dunno but it works.

 

good luck...

[T_Anna]

Not sure where you are in CT, but Dr.T in Ramsey,NJ takes Oxford.

T.Anna

[astridrobi]

Not sure where you are in CT, but Dr.T in Ramsey,NJ takes Oxford.

T.Anna

 

I'm in the northwest corner, but will travel anywhere in the northeast, really. Is "Oxford" insurance?

 

astrid

[ChrissyD]

Not a lot of people talk about her on this forum but you might be able to start with Dr Jyonouchi in Newark NJ. She doesnt have a terribly long waiting list. She's an immunologist and knowledgable on PANS. And she works for a medical center so she does accept insurance. Her approach is a little different than most but she's brilliant & a believer so she's a good start. She's doing a clinical study on PANS and immune dysfunction. She does a lot of immune testing & typically will test strep titers, but usually doesn't do a screen for Lyme, mycoplasma etc.. She treated my son for about four months with Azithromycin and pulse steroids and got him to a better place. Please DM me if you like and I can share more details and advice.

 

Edited to add...she uses IVIG in some children also.

Edited March 1, 2013 by ChrissyD

[borsooq]

Hello I am very new to this forum. I am looking for some answers regarding my son's problems. Probably, like other parents.

 

We're facing really big problem with our son. Will describe shortly what's state for today, why I am writing here and what happened before problems occured.

 

My son is now 3,5 years old. We're diagnosing ASD right now. But, here in Poland this diagnosis could take even more than year, especially, that his state/behaviour is uncommon.

Problems he has:

- completely regressed speech - he speaks nothing. Sometimes says 'nie' (no in PL)

- walking on his fingers

- hands waving

- brain fog

- some sensoric issues

- anxious, scared especially when children cries. We have younger son, which is 6 almost 6 months now, and when he cries older son is very, very scared

- isolated, but looking at children

- still asking for same things (by showing with his finger)

- for 100% liver problems - big belly, but thin legs and hands. Easily visible ribs

- emotional liability (he laughs and after a while cries), very easily irritating

- ADHD - especially recently he started to be very very hiperactive. Sometimes he focuses for a longer, for example with puzzles

- sensory activities - these walkin on fingers, loud sounds, baby crying

- developmental regression - very much. He was speaking. He knew at least 13 words and set them into simple phrases. Now he is unable to say a word. He knew lot of animals - now only few, I would say.

- sleep and night time difficulties - he has very huge problem with falling asleep. I do remember period in time, when he was awakening and crying for a long time. It was strange, because he was like still sleeping - didn't contact.

- urinary frequency at a day: would say - yes. It is very strange that he pisses quite often, but doesn't drink much. He also makes a pile very often (4-5 a day, but stool is quite good).

 

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Why I am writing here? Because we have a problem and looking for solution/origin. That's obvious, but why I suspect PANDAS or something similar? Becuase my son in november 2012 had sore throat and was treated with antibiotics - ampicilin. Of cours, our problems didn't start from november 2012, but we're dating it somewhere at spring/summer 2011. Will write why below. Anyway, after this treatment he started to be more communicative. After long period of time he started to talk something, at least trying to talk (he said very, very nicely 'nie' - 'no' in PL for my question if he finish eating an apple or not. It was so aware and nice with shaking his head correctly). He was much less hyperactive and focused. It looked like he is returning back. Now situation is worse, than before. Maybe the same.

This is the reason, why I am writing here.

 

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Some history.

My son was developing himself perfectly. He is preterm born (3 weeks) and was very little 2510g. We were so happy up to his 18-20 month of year, that he doesn't wait and develops so quickly and smoothly. He was early-babbling, turning in his stomach, crawling on his four, babbling, standing, walking sooner than his other children.

The reggression was after infection or vaccination. We don't know - it was really slowly and discrete. When we compare his speech from 18 and 30 months of life we can see dramatic difference, but it is quite big range of time. We were pointing our doubts to the doctors, but they always was saying that it is temporary behaviour or kids just behaves like this.

He had really lot of vaccinations too. But he had also very, very strange diarrheas when he was 13 months old. These diarrheas were investigating in our biggest polish children medical center (epic fail) without any conclusion. We're not sure of the regression didn't start from here (diarrheas). These diarrheas was very enigmatic and the only one clue about them is my wife's aunt. She is only one connection between our son and other child - her granddaughter which also had such enigmatic diarrheas, at least two times when she was at hospital with this. The times of occurence of these diarrheas could be bigger, but we're not sure how many times she had it. It can be caused by higher contact of the granddaughter with her grandma, my son sow my wife's aunt only two times in life - first month before diarrheas, and second... in the spring 2011, just after what the regression became really visible. My wife'e aunt up to today hasn't cured this issue - she has never finishing rhinitis, some skin issues, headaches and much more.

This is reason, why I am looking for solution here.

 

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What from my son's behaviour doesn't match ASD:

- he has perfect eye-contact

- he smiles very often

- loves to be with his parents, grandmas and other people, thet he knows

- no other ASD-like behaviours

- does not fear new places and people - just stays beside

 

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Could you please tell me if it could be PANDAS? What to do to check that?