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Guest matthews mom

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Guest matthews mom

Hello!

I am looking for anyone to shed some light to our family who thinks our son has PANDAS.

Matthew is 7. We had bouts with strep at age 5 to where the ent dr suggested that we take out his tonsils. We did not. slowly we noticed tics like finger movements that seemed just a nervous kid thing.

Then it was small movements eyes... nose etc. It would change. the straw that broke the camels back was in the car when he would sit with his hands neatly in his lap and I asked him why.... he started to cry telling me that he cant stand the he has to touch the handle then touch it again with the other hand.

I knew then I had some thing other than a " oh its just a kid thing he will grow out of it" situation..... pouring over the web and a great friend who said to me " have you ever heard of PANDAS?" When I read the symptoms I cried and cried... this just did not explain his tics, but the baby like talk sometimes, his separation anxiety, irritability mood swings... on and on.

This is all new to me.... I called his Dr ( we have Kaiser) and he said he was going to pour over some research on PANDAS over the weekend and that for now book an appt for the pshyc. dr. ( which I did)

Does this go away? can I get treatment from a reg dr? I am a mom that already watches what my kids eat and do give them supplements of omega 3 and probiotics daily.

Someone suggested a DAN dr.

HELP!

Edited by matthews mom
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MatthewsMom,

 

I'm so sorry you are dealing with this, but glad you found this forum. PANDAS does not just go away that I'm aware of. It can be a long, hard battle, but it is possible to get your child well. A "regular" doctor with knowledge of PANDAS can treat, but it can be difficult to find a doctor who will take it seriously, do all the necessary tests and treat it aggressively until it resolves. Hopefully, others from southern CA will chime in on who are the best doctors down there. I know I've seen some discussions of this and there are one or two who sound great.

 

Here are some of the things you'll want to test (again, others can add to this):

ASO and Anti-DNase B titers - these can prove a recent strep infection, but absence of raised titers does not rule out PANDAS

immune testing -IgM, IgG, IgA, etc - a number of kids here have come up immune deficient after testing)

Mycoplasma Pneumonia - some have tested postive for this and it is a suspected trigger for PANDAS, in addition to strep - if it's present, you need particular antibiotics for it)

Lyme Disease and coinfections - many families on this forum are starting to test for this, and many kids have turned up with a positive for Lyme, Bartonella, Erlichea, or Babesia - there's a separate Lyme forum where you can learn more about this

 

This is a complicated illness, and no one has all the answers yet. The forum is a great place to learn more, hear about others' experiences and ideas, and get emotional support.

 

There's a thread at the top call "Helpful Threads for PANDAS" which has some very valuable information.

 

Within that is a thread on "Doctors We've Seen Who've Helped with PANDAS." Here's the link to that: http://www.latitudes.org/forums/index.php?showtopic=5023

 

I wish you all the best on your journey to get your son well.

 

Jennifer

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MatthewsMom,

 

I'm so sorry you are dealing with this, but glad you found this forum. PANDAS does not just go away that I'm aware of. It can be a long, hard battle, but it is possible to get your child well. A "regular" doctor with knowledge of PANDAS can treat, but it can be difficult to find a doctor who will take it seriously, do all the necessary tests and treat it aggressively until it resolves. Hopefully, others from southern CA will chime in on who are the best doctors down there. I know I've seen some discussions of this and there are one or two who sound great.

 

Here are some of the things you'll want to test (again, others can add to this):

ASO and Anti-DNase B titers - these can prove a recent strep infection, but absence of raised titers does not rule out PANDAS

immune testing -IgM, IgG, IgA, etc - a number of kids here have come up immune deficient after testing)

Mycoplasma Pneumonia - some have tested postive for this and it is a suspected trigger for PANDAS, in addition to strep - if it's present, you need particular antibiotics for it)

Lyme Disease and coinfections - many families on this forum are starting to test for this, and many kids have turned up with a positive for Lyme, Bartonella, Erlichea, or Babesia - there's a separate Lyme forum where you can learn more about this

 

This is a complicated illness, and no one has all the answers yet. The forum is a great place to learn more, hear about others' experiences and ideas, and get emotional support.

 

There's a thread at the top call "Helpful Threads for PANDAS" which has some very valuable information.

 

Within that is a thread on "Doctors We've Seen Who've Helped with PANDAS." Here's the link to that: http://www.latitudes.org/forums/index.php?showtopic=5023

 

I wish you all the best on your journey to get your son well.

 

 

Jennifer

 

 

I am new to posting and new to the Panda's journey but believe we all need to share our experiences rather new or old. I have heard Dr. Steihm in UCLA Medical Center has much experience with Panda's and infectious disease. Dr. Thomas Lin in Irvine Ca - he is a DAN doctor/pediatrician that has been treating Panda's for 2 years now. We have just started with Dr. Lin and like him. I do not have much else to share since our journey is just beginning but I do know these docs can and have helped. Also, you will soon read about Dr.K on this forum - he is in IL but consults with people all over the country. We had a phone consult with him and he was great. Many fly out to him for treatment because of his expertise. Does not hurt to have phone conversations with whom ever will talk to you and LISTEN. Good luck.

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If it turns out that your son is immunodeficient, as many PANDAS kids are (and it sounds like your son might be based on long battle with strep), we have been having a great experience with Dr. Sean McGhee at UCLA (pediatric immunologist). I have two kids who both have immunodeficiencies and PANDAS, and Dr. McGhee has been great about doing whatever it's taken to keep them well. With immunodeficiencies in particular, there can also be other complications, so I like the fact that we have an expert immunologist watching them carefully, and then knowledgeable referrals to the best docs at UCLA for any other specialized needs. And my kids have had great experiences getting their IVIG at the UCLA pediatric procedures area. They have a "child life" staff member who is educated in how children of different ages respond to medical procedures (emotionally) and who brings them age-appropriate distractions, games, "medical play" equipment, crafts, DVDs, snacks, nice presents they get to keep, etc. - and the whole staff does what it takes to make the kids comfortable. Believe it or not, my kids actually look forward to going.

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Hi Matthews Mom,

 

Just wanted to let you know I am in OC too (Rancho Santa Margarita) and thanks to some recommendations from people on this forum I too went to see Dr. Lin in Irvine. He diagnosed my daughter with PANDAS after I spent almost 2 years of thinking she had Tourettes. He has been very helpful and my daughter has improved greatly under his care. We are also at the beginning of our journey with PANDAS so I don't know what lays ahead but I feel very comfortable recommending him to you. I can definitely say he aggressive with his treatment and feels PANDAS is nothing to mess around with. He is very easy to work with thus far. Feel free to PM me if you want more info. Good luck!!

 

Caring Mom

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By the way, surfcity, for me the "all the other options" piece is one of the things I like about UCLA (even though I hate driving there), given that my kids have broader issues than PANDAS. Any time I've had a concern about stuff possibly going on with my kids (kidney issues, gut issues, etc.) he has been willing to run the appropriate tests and/or refer to the appropriate specialist at UCLA "if there is any question of...".

I then feel like our doctor will "vouch" for my kids' situation and that I'm not just some paranoid mom, and I don't have to start from scratch trying to find a specialist who "gets it". He knows how to direct us to the individuals in the respective departments who will be best for their particular situation.

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so cal moms I was trying to start a support group here ( I am in HB) it is just so hard when you are treating your child. If any of you want to try to get together, let me know. Maybe we could just go to the beach for a bonfire, let the kids run wild, and just support each other.

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I'm in HB and would love to meet with other Mom's and Dad's of PANDA children. Let's get this together ASAP. How about this Saturday? Is anyone interested? With or without kids? Wendy

 

As far as the other HB Mom, please, lets talk soon!

 

I PM'D you, I may be able to do this sat, but my dd will be with me. Ideal to be at the beach or something so kids can play while we talk. email me so we can set something up.

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