I just really need some help/advice

[mmiglio]

I am new to PANDAS. My dd11 was diagnosed six weeks ago but I'm not certain she has it. The diagnosis was based on her strep titers by a Dr. at National Integrative Health Associates in Bethesda, MD. In addition to OCD she has ADHD and ODD and was having some GI issues so I was looking for some answers. They did a ton of blood, urine, stool, hair tests and came back with PANDAS.

 

She recommended one month on Augmentin to start, which we did, and OCD/ODD only got worse. On Monday we started Zithro, and today I added (based on the advice of someone here) a low dose inositol. She is also on Nystatin for yeast overgrowth and takes what I think is a good probiotic and a good multivitamin that has Vit D and omegas.

 

Today was one of the worst days ever.

 

I am in Virginia Beach and have an appt with a pediatric neurologist at CHKD, our area children's hospital but not until July 16. She treats PANDAS but I don't see her name on any of these forums so I'm certain she's not one of the "good ones."

 

Until then I feel like we are on our own. She has been going to a CBT psychologist since before her diagnosis back when we thought she might "just" have OCD. But lately her defiance is so bad she won't do her CBT exposure therapy.

 

Our life is basically right now. She has extreme mood swings. She throws things and scratches me. The list of things she is afraid of gets longer every day. She does not have any tics or rituals, however. And her OCD did not come on quickly but gradually. Everything I've read seems like OCD just happens very quickly with PANDAS.

 

She has no urination issues although last year at age 10 she did go through a short phase of wetting the bed.

 

She is somewhat clingy but more that my husband is military and is gone all the time and we have no family in our area so it's usually just she and I. She hasn't had any decline in handwriting or math skills and is in fact in all advanced classes on the honor roll.

 

She says she is afraid of everything all the time and that it is a struggle just to get through the day. Most is related to germs and where germs might be. She won't eat things that have been in the fridge or pantry for very long or that have been opened or left uncovered. I broke a glass recently, and a book she was reading was nearby, and she won't touch it. Tonight she shrieked in fear of a towel I handed her to dry her hair b/c she said it had been hanging there for a while and it has germs on it. She won't use hair rubber bands (she has very long hair) that have been in her drawer for a few months. She is constantly afraid of vomiting and says she would die if it happened.

 

I don't know where else to turn. I feel alone and angry and scared for her. Should I wait it out til July 16 to see our local dr or try to see this amazing team at MGH that I keep reading about or try someone else?

 

Anyone have any ideas or suggestions? I have spent hours and hours reading through these forums trying to find some answers, and I just get more confused and more afraid for her.

[SEAMom]

I keep hearing about how fabulous the docs are MGH. If you are close enough to make it work I would. I am on the west coast and we have doctors that are recommending going out there for treatment. I would not wait. It could take a while to get in too. It is probably worth a call to find out.

[pr40]

did you try iburprofen?

did you try steroid burst?

did you try to descrease inflammation?

do you know if she might have food intolerance, metal posioning, mold issues, lyme? some of the symptoms you describe would be the same and abx would not help.

usually, you should go on an abx combo if you don't see results.

you are close to dc --- you could try to get apt there too just in case

Edited May 21, 2015 by pr40

[mmiglio]

did you try iburprofen?

did you try steroid burst?

did you try to descrease inflammation?

do you know if she might have food intolerance, metal posioning, mold issues, lyme? some of the symptoms you describe would be the same and abx would not help.

usually, you should go on an abx combo if you don't see results.

you are close to dc --- you could try to get apt there too just in case

 

We have not tried ibuprofen. What dosage do you recommend? My daughter only weighs 58#.

 

Never heard of steroid burst.

 

She has intolerances to gluten, dairy, soy, eggs and pineapple, and we've been following that diet for three years. Negative on all metals; negative on nine of 10 lyme. Not sure if we've tested for mold. I'll have to go through the pages again.

 

Which Dr is DC do you recommend? Latimer? I'm going to call her office today since it seems unlikely to get to see drs in Boston anytime soon.

Edited May 21, 2015 by mmiglio

[mmiglio]

I should add the dr is now recommending we add Mepron for a possible parasite and then Diflucan. She already takes Nystatin. how many antifungals can one body handle?

[kmacdonald34]

I am sorry you and your daughter are struggling with all of this. We see the team of dr at MGH. Dr WIlliams heads the PANDAS clinic but it is hard to get in and see him. I called in January and I was told it would be 6 mths to hear about even getting an appt. We ended up seeing Dr. Walter the immunologist on the team and she got us in to see Dr. Williams after she saw my daughter. I would probably see if there is another specialist closer before making the trip up her.

 

I agree with previous poster that maybe try a combination of abx. We saw Dr Williams the other day and he said that could be a possibility or a combination of abx and aleve if things get off track for my daughter. We have also talked that down the road IVIG might work for my daughter because she has immune deficiencies too.

 

I hope you find some answers and something that works.

[HopeinHIM]

Deep breath. Sounds like you are in the eye of the storm. I too he an 11yr old with vey similar symptoms. It's been 2 years. I will message you my cell bc too much to discuss. If you like you can call me. We are on the East Coast. It's a journey for sure and every child is so different so no one thing works for all. Have you done the Igenx?? Does she have any physical symptom's? Sore feet? belly aches? head aches? My son had the Igenx and it was inconclusive but the Dr began treating for Bartonella and the rages and ODD stopped. He too says he is afraid of everything all day. Uhg these poor kids!! If their nervous symptoms are on high alert then that's what you can expect. Check her viral load. We give Lysine and it helps a lot as well. Our Dr also placed him on ADP Oregano and it helped with yeast amazingly. Better than the Diflucan for us. One of the anti biotics that cross the blood brain barrier might be very helpful. Minocycline or Rifampin. Every few weeks on the meds you can expect things to get worse due to die off reaction. Make sure she is getting some detox help. Even the best doctors don't' usually address all of the components involved with this illness. You have to do your own research and take what is helpful from each. It's sadly trial and error along the way so keep a daily journal. Hang in there and call me if you like.

[mommybee]

If augmentin and azithromycin made symptoms worse, you could be dealing with a Herxheimer Reaction from Lyme. If Lyme is present, steroids would absolutely be counter indicated because they depress the immune system and make symptoms worse. Also, while we live on the east coast so our care is at Mass General, Stanford is known to have a wonderful PANS care. I've heard Dr. Jennifer Frankovich speak and would personally be thrilled to have her as our doctor. Here's the link.

http://www.stanfordchildrens.org/en/service/pans-pandas

[nicklemama]

Your daughter sounds like she has PANDAS and if a doctor has given her that diagnosis, I would feel pretty confident. My son has never had problems at school and he is going into the gifted program next year in middle school. He is 11.

 

Make appts and see whoever has the first opening. Dr L is a good choice. It takes months to see theses experts.

 

Ibuprofen dosing is 5mg/lb. every 5-6 hours. Try that for a couple of days. Stop the inositol if it makes things worse.

 

I'm curious about the mepron. That's used for babesia. Has your daughter been evaluated for Lyme?

[mmiglio]

Your daughter sounds like she has PANDAS and if a doctor has given her that diagnosis, I would feel pretty confident. My son has never had problems at school and he is going into the gifted program next year in middle school. He is 11.

 

Make appts and see whoever has the first opening. Dr L is a good choice. It takes months to see theses experts.

 

Ibuprofen dosing is 5mg/lb. every 5-6 hours. Try that for a couple of days. Stop the inositol if it makes things worse.

 

I'm curious about the mepron. That's used for babesia. Has your daughter been evaluated for Lyme?

 

We do have a PANDAS diagnosis due to high strep titers. Also high mycoplasma pneumonia. The dr wants to start her on Mepron b/c of her herxing, specifically the rage/anger/throwing things. I guess she said other patients with babesia have reacted the same way. She tested negative but I guess there are only two strains of 100s that can be tested. She doesn't have another other symptoms of babesia or lyme for that matter except for the herxing. I can't get an answer if there will be herxing with mycoplasma pneumonia. Do you know?

 

After four weeks on Augmentin and 10 days on Zithro we are seeing no reduction in her OCD symptoms. I was thinking the low doses of inositol I was giving her was helping but then I realized today I think it's actually making her ADHD worse so I'm thinking of tiering off the inositol and adding NAC instead.

 

I'm only giving her (1) 125 mg tablet and most times she refuses. I don't know how I'm going to get 300 mg in her. It is an OCD thing. She thinks it will make her throw up.

 

We do have an appointment with Dr. Latimer in Bethesda but not until June 18. I'm going to keep pushing with the zithro, detox and advil as much as we can until then.

[DsMom]

You might want to pay attention to the supplements to see if you notice anything different after she takes them, specifically Omega 3's, Vit D and Nac.

 

They all did a HUGE number on my kid, amped everything up for him, the anger, depression, tics, itching sensation, mood swings, you name it - he took those supps and he exploded in any and all of the above.

 

Many PANS kids react that way to those suplements, I have to keep food w/ extra O3s in it and Vit D at bay even now.

 

Steroids also were the worst thing ever for my DS, unbelievable really how bad they were for him, but he manifested PANDAS in the tic/Tourettes fashion, OCD was in form of anxieties like your DD, no rituals, but lots of fear of germs, etc.

 

Per NIMH kids w/ tic-type PANDAS should be wary of steroid use and I can assure you they were correct based on our experiences (probably 4 different trials that were all disaster). Also SSRI's ; stay w/ the Start Low and Go Slow method, basically on virtually everything in mho.

 

The advil/Ibuprofen was a help for us, a tiny help, but a help none the less, so I would definatley give that a whirl, 3x a day, lots of water w/ it if you can get it into her. I set my watch by the dosing, if we missed one we really could tell immediately.

 

Dr. L is great, & Dr. F at Stanford as well, but they only see CA residents at her clinic.

 

Oh, I wanted to mention that DS's handwriting never really went super wonky, and his math skills seemed to stay fairly intact, although in year 2 he got serious brain fog which could have been the POTS he had by then, and/or the Babs he's being treated for now as well. He didn't have any urination issues at all until the 2nd year either, but then that started and stayed around for another year, so I think some symptoms can come and go...and then come back again sadly.

 

Hang in there, try the Ibu and hopefully you will see some positive movement.

 

ET

Edited May 28, 2015 by DsMom

[mmiglio]

She has always taken the same multivitamin. I guess I could stop it for a few days to see if I notice a difference but really every day is different right now so I don't know how I would even tell.

 

Water is a whole other story. Ugh. She won't drink anything. She's always been that way but now it is worse. She drinks maybe 15 oz a day and that is with me practically forcing it on her. Is this a symptom?. It must be.

Edited May 28, 2015 by mmiglio

[LNN]

My son's lyme made him rage. My daughter's rage/mood swings came from a problem with methylation. Methylation is a process every cell in your body uses as a factory to convert raw ingredients (vitamins/minerals/amino acids) into energy and more importantly, neurotransmitters. When a glitch in the DNA prevents your methylation cycle from running smoothly, it can create mood issues. There are two kinds of problems - overmethylation and undermethylation. For overmethylators, niacin (vitamin B3) hels with rages. For undermethylators, the methyl form of vitamin B9 (methylfolate) helps. If you go to the pinned Helpful Threads at the home page of the Pandas forum, thread #18 goes thru the testing you can use to explore methylation and lists some helpful articles.

 

Illness can also hinder methylation, since the body needs to divert nutrients to the immune system and away from neurotransmitter production if raw materials are insufficient to make both.

[rowingmom]

My son's lyme made him rage. My daughter's rage/mood swings came from a problem with methylation. Methylation is a process every cell in your body uses as a factory to convert raw ingredients (vitamins/minerals/amino acids) into energy and more importantly, neurotransmitters. When a glitch in the DNA prevents your methylation cycle from running smoothly, it can create mood issues. There are two kinds of problems - overmethylation and undermethylation. For overmethylators, niacin (vitamin B3) hels with rages. For undermethylators, the methyl form of vitamin B9 (methylfolate) helps. If you go to the pinned Helpful Threads at the home page of the Pandas forum, thread #18 goes thru the testing you can use to explore methylation and lists some helpful articles.

 

Illness can also hinder methylation, since the body needs to divert nutrients to the immune system and away from neurotransmitter production if raw materials are insufficient to make both.

 

Yay, the methylation guru is back! Good to see you LLM, and glad to read about your son's improvements!

[Mayzoo]

My kiddo loves water and would 8-10 glasses a day or more, unless she is flaring. Then it is GREATLY reduced for whatever reason, she has verbal delays to no speech at all , so she cannot adequately explain most things to me.