Overwhelmed here....

[ChristySnyder]

Not sure where to start other than the begining.

My name is Christy. Joshua is my grandson, he is 6 1/2. My son was in the Marines and Josh and his mom had moved to Texas, we live in Montana. I recieved a call from her asking if I would take him, otherwise she was turning him over to the state. So at 17 months old Josh came to live with us.

Josh is deaf and right away the behaviour issues were very bad. Everyone said it was deafness related. We took him to a specialist who diagnosed him with OCD at 2 1/2. He was put on risperdone and prozac. We didn't noticed that it helped much. At 3 1/2 we made the decision to have Josh implanted with cochlear implants. He did good for a few weeks, but then got sick and had multiple infections, including strep. After, he became a mad person. We took him back to the specialist. She couldn't figure the problem other than maybe the trama of surgery made the OCD soemhow worse. But the aggression was terrible. Then came the impulse issues, so bad they also put him on Focalin.

He started pre K that fall (4 1/2 then)and it was awful. He was terrified of strangers and would cling to me so bad we called him the octopus. His speech is so far behind the other kids and it is so difficult for him to express himself. We muddled through and he went to kindergarden last year. He had an on and off time all year. Luckily we live across the street from the school because I was there most days. In April, Josh was very ill. The Dr thought he had strep (white crud and bleeding) the rapid strep came back negative but the flu came back positive. They put him on abx and we went home. The next week he returned to school. Monday was good, Tuesday he woke up and all our progress was gone. He screamed, cried, wouldn't go to class without me. He hit kids, threw chairs and the screaming. He kept saying shut up even when he was by himself, did I mention the screaming . Hitting the dogs, spitting on people, making funny sounds in his throat, gagging on foods, gorging himself on others, complaining his leg and hip hurt, jumping on furniture, ripping holes in my rattan rocker, yelling at Papa and I. On Thursday I called his Dr and scheduled an appointment for the next Tuesday. On Monday I picked him up from school and he screamed he had a headache, also his eyes were dialated. We got home and he layed on the couch, then threw up. We figured head injury so rushed him to ER. They found nothing. At our appointment the following day our Peds Dr said it could be a bone infection or something he had heard of called, Pandas. We had blood work done and went home with abx. Blood work showed no infection, but the abx semed to help a bit with his behaviour. When we finished it the behaviour was back. So bad the school said if we didn't do something he probably would have to stay home. I called the Dr who told me it was more than he could do and we needed to take Josh to a Psyc, I was furious. Managed to finish out the school year with me sitting in class with him.

Then I found this site. I called Dr. T. and he made us an appointment for a phone consult. He ordered the tests and Tuesday confirmed to us that Josh has Pandas, and also needs to be treated for Lyme? There has never been a case of lyme here in Montana, so I think Josh was bitten in Texas. That would probably explain some of the behaviours we have seen all along. But where do I go from here? How do I learn what these tests really mean? Josh's lyme bands that were positive are 41, 66 and 39. I looked at the CDC info and it says he needs more for a positive but Dr T said in areas where Lyme is common they treat at 2. Where do I find this info? We hae an abx to try for a couple weeks, but what else can I do? Were does Pandas start and Lyme take over or does it really matter?

[dcmom]

What an amazing Mom and Grandmom!!! Your grandson is lucky to have you.

 

First, take a breath. Give yourself a quiet moment.

 

(I have two daughters with pandas). You will get tons of support and advice here. I am not going to give you any medical advice- but rather a more general bit of advice that I have learned over the years.

 

YOU will be in the driver seat with all the docs you see. Both Pandas and lyme are kinda murky uncharted territory, and you will get different answers and different protocols from almost as many docs as you see.

 

IMHO it is important not to change more than one thing (about) every 30 days, so that you can tease out what is working.

 

Also- GO WITH WHAT WORKS. If you are trying a treatment that has made no changes in (about) 30 days, it may be time to move onto something new. Try new things, and if they work, stick with them!

 

Use lab tests as a general guide- but IMHO symptoms should be your ultimate guide.

 

All of this sounds obvious- but doctors do not always work this way, and when you start seeing multiple docs- things can get messy.

 

If your son had pandas (only) I would tell you that with aggressive medical treatment plus quality therapy, you should be on the road to healing and managing this disorder within a year. I would imagine that lyme on top would add another year.

 

I guess I would highly recommend the University of South Florida to you. They have a psychiatrist (Dr Tanya Murphy) who has published, done research, and treats pandas patients in a university setting. She also works with a team of psychologists (led by Dr Eric Storch) that are among the best at treating OCD.

 

Good luck, hang in there.

[Missmom]

You will hear this a lot here but one of the easiest things to try right now would be ibeuprofin. You will probably need much more than that but at least it may calm him down some until you figure out with your doctor a better protocol. Also others on this board have tried Pepcid at night as well. Sounds like you will have a long road ahead but until you can get the abx for Lyme and pandas whichever you and your dr. Decide to treat first, that would be an easy place to start.

[ChristySnyder]

Sorry it has taken so long to get back here. Thank you for the suggestions. Josh is taking abx ( DR. T put him on that Wed), pepsid BID (read that here and Dr T said go for it) and motrin BID. I am not sure how long before we see improvement with the ABX. The only thing we have noticed so far is he is able to sleep a bit better.

 

Joshuas blood work also showed he is a non responder for many of his vaccines like diptheria. Is this common in pandas or lyme kids or something else? I was so overwhelmed on the phone with Dr T that I forgot to ask.

Edited July 23, 2012 by ChristySnyder

[Dedee]

I want to just give you a big hug for taking such a huge step for your grandson. This poor child has had more than his share of issues. Clearly his history of multible infections has caused issues with his behavior. I am glad you are able to find some help for him. I am sure Dr. T will be invaluable. My advice is to never be satisfied if you don't feel something is working. These kids all react differently to different medications, antibiotics, etc. If one isn't working, contact the doctor and talk to them about switching to another. When ever we start something new, I always ask when should we expect to see change and when should I notify you If I see nothing. If you don't get what you need from one doctor, don't hesitate to find another. Many on this board have seen several of the "specialist". Sometimes each different doctor is able to bring a little bit more in focus. Keep reading on this forum and you will learn lots of valuable information. Keep up the good work and bless you for your dedication and love for your grandchild.

 

Dedee

[mdmom]

Christy,

if you haven't done so already, I encourage you to cut and paste your original post onto the Lyme forum. Many people there are dealing with Lyme and PANDAS - one of them being me. My son, now age 14, has a similar history to your grandson. He went undiagnosed for many years, so that has made his treatment much longer and involved. But the good news for you and your grandson is that he is still young and you have gotten the diagnosis which is the first step.

 

Next....take a deep breath knowing you are in the right place to get more information. The best thing you can do is educate yourself. Poke around the PANDAS and Lyme forums here.

 

Something also to keep in mind is that PANDAS now falls under a broader diagnosis of PANS - Pediatric Acute-Onset Neuropsychiatric Syndromes. PANS can have different triggers, with strep being one of them (PANDAS). PANS can also be caused by Lyme and other tick-borne illnesses, Mycoplasma, etc. You can read the scientific paper on PANS written by Susan Swedo at www.pandasnetwork.org.

 

 

Something that stood out to me in your last post was the fact that your grandson didn't seem to respond to vaccinations. This is possibly a sign of an immune deficiency and actually will help you get further treatment. Google "Primary Immune Deficiency" for more information

 

Lastly, stay on your doctor to get the help you need. There are few docs paying attention to PANDAS and Lyme, and some are overwhelmed with patients. If you aren't getting what you need, find another doctor. The internet is your best resource!

 

Best of luck to you. Your grandson is a lucky boy to have you fighting for him.

[Hopeny]

Christy thank goodness your grandson has you. With your grandson's complex condition I would recommend a consultation with Dr. Charles Ray Jones, he is the most experienced pediatric Lyme specialist in the country. For my daughter we are seeing both a PANDAS doctor and a Lyme specialist, each has a different expertise. You can get a grant to cover some of the Lyme medical expenses at Lymeaid4kids. Dr. Jones is in Connecticut.

[mdmom]

Definitely apply for a grant from LymeAid 4 Kids - you can get up to $1,000 to help with diagnosis and treatment. It's not much, but will get you started. It would be great to know of someone on this forum that will benefit from the fund. 2 months ago my 12 yr old daughter who suffers from Lyme, Babesia and Bartonella hosted a fashion show and tea to benefit LymeAid 4 Kids. She raised enough money to benefit almost 3 families.

 

All of our kids have struggles here - but they are changing the world in their own ways

 

You can get more information by going to wwww.lymediseaseassociation.org