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Complex Special Needs

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Old 08-06-2010, 06:10 PM   #1
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melliann HB User
Unhappy Complex Special Needs

If you guys would think this would be in a better category just let me know. I'm a newbie. Just so you have some background information about me (since this is about my son) I have been diagnosed with Bipolar, Depression, Anxiety and Adult ADD and I have the positive markers for Lupus and have had the trademark butterfly rash but I have been way too busy with my son's appointments to go and see my dr, but I am next week all because I twisted my ankle 6 almost 7 weeks ago and the muscles are fine its the joint that is causing the pain.

Anyways my son is 11, and in his 11 years he has been diagnosed with 24 different medical problems, the one he got at birth was Down syndrome (I know there is a board for Down syndrome but when I looked in it, it is some moms who are getting positive markers and higher functioning kids and I don't want to scare those soon to be momma's because Ryan is a rare case). Anyways my biggest concerns right now are urology and after doing some research neurology. I am having the hardest time trying to find a specialist that works with complicated kids. I talked to the down syndrome clinic at Children's hospital and they said they couldn't help me that if I wanted to go there for an evaluation that I would have to start all over from scratch with genetics, I don't want to do that again, it wasn't me that caused the down syndrome it was his druggie biological sperm donor (he told me it was my fault when I told him about Ryan and Down syndrome I told him where to go and how fast to get there, he has nothing to do with Ryan, to Ryan my husband is daddy), anyways my husband and I had our own kids who are healthy as can be (and they are only 7 minutes apart in age and yes they are identical). I was young when I had Ryan (I was 19 almost 20 when he was born and it gave my 2 younger sisters a crash course in not having sex before you get married). I just don't know where to turn to, we went down to the University of Minnesota Urology and she said that she would find some names of specialists, well they are not taking in new patients, the one that I have found online in Minnesota spends half her day at the hospital doing rounds and is the Chief of Staff at Children's Hospital and no she isn't taking in any new patients.

I am making the trip down to the Mayo Clinic the beginning of September to see what they have to say (I didn't like what the urologist said yesterday). The problem is my son's brain structure is smaller than what it should be and his brain stem is smaller than what it should be considering the size of his brain so that is why we haven't been able to potty train him, he has what you would call a neurogenic bladder, he also has a fat lipoma along his lumbar region. We have done bladder tests that have shown that he retains it so much that his bladder has been stretched up to his belly button, and in turn it causes fluid to be retained on his kidneys, his left kidney is damaged because of it. I just can't seem to find the different procedures online that can be done. The specialists have given me 4 options and none of them sound like a good fix for Ryan.

I'm constantly running around and when we see specialists I hate telling the story all over again, even though there are changes with each specialist. I just wish that I could have them all in one room at one time and just get it done and over with, they could talk to each other about different ideas and what to do. Oh I can dream can't I.

Oh and it was so bad yesterday at the U that I started crying in the doctor's office, I've always done my best to keep a positive outlook on things and not let my kids get worried, but I let my guard down and lost it, I couldn't help it.

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Old 08-06-2010, 06:33 PM   #2
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Re: Complex Special Needs

Hi Melliann...and let me tell you I feel for you and all the problems you and your son have.

When my daughter was 7, she got a blood disorder and I went looking for help(this was 1983) and stumbled upon a woman who was starting a summer camp for disabled and able-bodied kids. We got involved for several years even though our daughter recovered. You may have seen her husband and son on TV...his dad pushes him in a 3 wheel chair on marathons. They've done the Boston marathon for over 20 years and even the Iron Man Triathalon. Rickie has CP and is non-verbal and the only motion he has control over is the sideways movement of his head. He uses that to tap a keyboard to communicate. He was the first one to use the new eye controlled communicators.

Anyhow, through them, I met many moms and dads of severely disabled kids, many with Down. The first organization I learned about was NORD...National Organization for Rare Disorders....they are a clearing house for resources for rare disorders of all kinds. Check them out and ask about docs who treat the exact disorder your son has because they can find support groups and docs and research centers who are doing work on his particular kind of Down.

But the one thing I did learn from these moms is have to become the doc in the middle of the tornado around you and him. All of them learned as much as they could(as I know you've done) and as overwhelming as it gets, you have to demand records and keep them straight and repeat the stories a hundred million times if that is what it takes to find the right doc. I know it gets tiring and that is why YOU need a support group whether it be in person or on-line. Find one. If the moms here are all dealing with new cases or possible birth defects, then ask if there are any moms of older kids out there to talk to. NORD should also have other resources.

I have a ton of medical problems myself and I get so tired of telling the whole thing over and over and I go for therapy to help me stay sane. If you can afford it, treat yourself to some professional's a real sanity saver.

And also resign yourself to the fact that sometimes you are left with the lesser of evils when treating your son. Sometimes there isn't an answer. And sometimes you may make mistakes and that is okay. You don't intend to make mistakes and that is why they are one, including you, should blame anyone if you do. Blame means there was intent to make that mistake and I know you would never hurt your son no blame...ever. You do the best you can with the knowledge and power you have.

good luck and gentle hugs.............Jenny

Old 08-06-2010, 06:47 PM   #3
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melliann HB User
Re: Complex Special Needs

I already see a therapist every 2 weeks, just not able to this month since Ryan doesn't have school. I do have my next appointment with her the day the kids go back to school and she said if I need it I can talk to her on the phone. I will check out NORD and see what I can find.

Old 01-08-2011, 08:50 PM   #4
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giveout HB User
Re: Complex Special Needs

Is there any way you could call Cincinnati Childrens Hospital? I think they would really do their best for your child. My son has a neurogenic bladder as well as other things and the urology clinic there has been wonderful. They tried everything they could for my son not to have to have surgery but unfortunately he still needs it. But they have so many specialists there that your son could use. Neurology, urology are two of the ones my son sees.

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