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Is it that he can't swallow pills or won't cooperate cause he doesn't want meds?

 

I've always put my dd meds in applesauce and if I run out, whipped cream. Both my 7 and 10 y.o. have an easier time with pills than the liquids that have a strong taste.

 

I also read in one of your other replies about your lack of a social support system. This is a tricky balance with most folks that don't "live" this craziness like we do. I usually don't say anything to my friends or family unless it is "big news" or they ask. And, frankly, it is nice to have parts of my life that don't involve this, but I'm an SLP and work with kids with special needs all day long, so I have to put effort into it. One of the best gifts someone can give me is a great book suggestion where I can get lost for a little while in someone else's drama! It's not easy to have friends right now, most people just can't relate or they make the BIG mistake of trying to use something trite they learned in psych 101, HA!

 

Is your son in 5th grade? My dd is and as if PANDAS isn't enough, the drama of 5th and 6th grade is enough to make one pull a Thelma and Louise off a cliff! Hang in there; you can always find someone hanging out here who can relate to what may seem like the unthinkable and unbelievable. I know it isn't funny, but I did get a chuckle out of trying to visualize the hockey mask tactic :huh:

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Our son does not have any trouble with additives/dyes but they do make dye free Benadryl. Also, I think the temporary daily use of Advil or similar might help. Kids Calm at night before bed.... its like a lemon tea and available at Whole Foods or on-line. Anything to hold you over until you can get to a Dr. that can help.

 

We used Igenex for co-infections but of course each LLMD has a slightly different preference on specialty labs. LLM gave you very solid information regarding ELISA and Lyme tests but you might get lucky and the results will provide you some clues.

 

Again, I think getting on Dr. N's wait list a.s.a.p. will help you the most immediately with long term solution.

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Searching Mom,

 

I had three thoughts regarding what you posted:

 

First, sounds like you're already doing it, and that is removing anything from the house that he could use to hurt anyone. My son came at me with a fire place tool about a year ago, and although he's doing much better, these are still hidden away (guess I'm not over the trauma of that yet). We put away all sharp knives and even things like plastic "light sabers" which used or threatened to use few times.

 

Second, a very knowledgeable PANDAS mom suggested to me some time back that the rages could have something to do with seizure activity. I didn't follow up with a neurologist at the time, but we are seeing one next week as I think my son might have had an absence seizure this past week and we want to follow up. Have you seen a neurologist to check on this angle? I would consider looking into this.

 

Third, I know the PANDAS/Lyme doctor situation in Texas is not good, but this Dr. R doesn't sound very helpful. I can't believe he wouldn't do a throat swab or recommend that you have one done by another doctor, considering your son's situation and the fact that his throat was inflamed! I would go to your pediatrician and ask for a throat culture asap - even if the pain has subsided. If they won't do it, you can go to an after hours clinic and say you think your son has strep and can they culture him. Is the doctor in CO a Lyme doc? If so, I would follow up on that. They won't reject you for calling them back when they haven't returned your call in over 3 weeks! I'm sure there was just a mix-up. The doctor in Plano doesn't sound at all knowledgeable about Lyme or PANDAS, and it doesn't sound like he was listening to you.

 

Those are my practical suggestions, but most of all I wanted to say that I admire you and feel for you. You are so brave and such a good mom. And I'm so glad you have your parents to help you. My heart really goes out to your little guy - he's sick and this isn't who he is. Don't give up. You will get him well - have faith.

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Dear forjpj,

 

Yes, we're hanging in there. Thank you so much for asking! Sorry I haven't gotten back on until now. Sometimes I get so overwhelmed I can't do much at all. Last night ds11 started to rage again and found a curtain rod we missed when putting away objects around the house, but there was no hitting that happened. I got really upset and told him I was worried about him, and he said he couldn't trust us because we held him down when we said we wouldn't. I told him I understood why he didn't trust us, and that it was okay. He seemed to listen to me a little when I was feeling genuine empathy for him instead of massive fear as I usually do. I'm leaving work now and don't know how the day has gone. It's always hard being at work not knowing what may be happening. I can't check in too often because I can't get any work done. And I get into a lot of fear all over again. I keep trying to remember that he really IS afraid, and it's bigger than mine right now. He doesn't have anyone else to hear him or help him. It's a lot to try to fix, and I hope I can muster whatever good energy I need tonight.

 

Still didn't call Dr. N yet, but I will. I think you all must understand the despair that takes over sometimes?

 

SearchingMom

 

I hope you guys are doing okay!! Thinking about you!!

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