Introduction

Iridescent - posted on 10/09/2010

Hi, Leslie! Thanks! I totally agree about medications; children with behavior/mental disorders very frequently have "rare" side effects, and sometimes can't even tell you what's wrong. You must be aware. I was started on Prozac when I was 12, and developed Violent Psychosis as a result. I tried to kill my sister and my mom didn't realize it wasn't ME! I was crushed, as I wasn't doing it, I really wasn't. I destroyed the rest of the medication and got better, no thanks to parents. It is now one of my known allergies and started me thinking about what we stick into our kids prior to doing it.

Josh is 11. He's autistic and has ADHD, depression, hypertonia. He had a lot of other problems when he was younger related to his autism (PICA, Failure to Thrive, self-injurious behavior, lack of speech until he was 4, toilet trained at 7). The doctor said he feels Josh may be one of the few that are found to go into remission from autism, and nobody knows how or why it happens yet. He also only sleeps ~4 hours per night, since birth, but he doesn't act overtired and crabby as a result so we leave him alone and taught him to play quietly when the rest are sleeping. We started him on medications for his ADHD and depression in September (after a 6 month waiting list to get in). The psych was very good! Something is wrong with Josh's liver, liver labs are all over the place, but we don't know why. So medications to be considered cannot be metabolized by the liver. We discussed every "group" out there, and ruled them all out to be honest. In the end, I was only willing to start ONE medication, so we would recognize any side effects. I finally asked about Neurontin, as it's used to treat bipolar in adults to deal with their ADHD and depression with one medication. It's also filtered by the kidneys, and doesn't get metabolized by the liver at all. We started him on it about a month ago, and he's been doing very well! He's still fidgety, but not depressed, and not aggressive.

Zach is 9. He was deaf when he was an infant, and we didn't know. His ear canals were corrected when he was 2 years old and he learned to speak. This past year we found out he has a kidney defect, but the doctors were unable to tell exactly what is wrong with it. He also has asthma. Otherwise he does very well.

Cassie is 3. She has Ornithine Transcarbamylase Deficiency. She has a huge list of other problems as well, and we're so glad she's simply alive and happy. She requires a 1:1 nurse at all times, and we have to take her medical records with us anywhere we go as her disease is so rare. Because of it, she has a feeding tube and a port as well, and we have to see a lot of specialists every 2-4 months 4 hours from here. She spent most of 2 years in the hospital, at which point we switched specialists and hospitals. Since then, she's been doing much better and we have hopes that she'll survive into adulthood.

Kaylee is 3. She was abused, neglected and malnourished by her mother. We got her and Justin at 17 months old. She remains underweight, but developmentally has caught up to her age group in all areas except attention and we have no other concerns with her.

Justin is also 3. He was also abused, neglected and malnourished by his mother. He is currently severely underweight. He had lacked medical care prior to us getting him, and had pneumonia for several months when we did. We kept bringing him to the doctor and he kept getting stronger and stronger antibiotics, and he finally got rid of the pneumonia a full year later. As a result he has lung damage and severe asthma. He really struggles just to talk, and eat, and drink. He doesn't have the strength to blow a candle out (or even flicker it). This spring we learned he also has no IgA immunity (Total IgA Deficiency) and he will never develop it since it's not a partial form. He's also likely to lose his other immune factors in the future we were told, because they are very low, and he needs them monitored every 2-3 months. They don't know why he lost his immunity, only that it could be part of why his asthma is so hard to treat and the cause of food allergies for him. He was allergic to a few things this spring, a couple more over the summer, and last month became allergic to nearly everything. He has been started on an elemental diet of EO28 Splash, supplemented with food he can eat (marshmallows, corn Chex, ants on a log, apple slices, unprocessed meat with no seasonings, mustard, honey, salt, plain potato, plain peas, plain corn). Sometimes he eats, usually he doesn't. We offer it but it's hard for him. He's also autistic, and is going through the formal evaluation now to find out how severe it is. He has very low muscle tone throughout most of his body, oral aversions making the foods he can eat (due to allergies) undesirable to him. His hands and feet are almost always blue, but we found out it's from Raynaud's Phenomenon and not related to his other health problems (YAY!). His care has been forwarded to the same doctors that treat Cassie this month, when his allergy doctor said she thinks she's missing something and he needs specialist care to find out what. Our appointment for both of them is on Wednesday.

I'm overwhelmed and scared to death, and simply can't handle it at times. My husband and I take turns sleeping, because we are required to be awake at all times for Cassie, so we're both really overtired as this has been the situation since she was born. But...things will get better. Just knowing what's wrong is the biggest battle. Then it can be treated. They're testing now for mitochondrial diseases in 3 of the kids, and we'll get those results sometime in December.

Leslie - posted on 10/08/2010

Hi Amy! My name is Leslie. I have eight children. Mine also all have special needs to varying degrees. Also with lots of issues with learning ect. It is very difficult to sit where I am because I truly feel that no one else has a clue for the most part! I would love to hear about your children and would be happy to share anything about my own familythat might help someone else. I hope that I am able to learn something from someone else who has already been there and done that. I have children with add, adhd, aspergers, t 10 paraplegic, epilepsy , dyslexia, sensory intergration dysfunction disorder, ocd, asthma, allergies, odd, just to name a few things and I am sure their are other letters in the alphabet I forgot to add...lol I have to find humor in it somewhere or I would loose my mind. My daughter with aspergers currently sleeps about 3 to 4 hours in a 24 hour period. So, I am sleep deprived and praying I make it through this phase of our lives. We have had horrific reactions to behavior medications. You know all the rare side effects? We have had them. Geodon, Risperidal, and Seroquel have been tired all with bad reactions. If I could just encourage anyone reading this that if your doctor puts your child on a new medication always know the worst case senerios. If I had not known, I would not have my daughter now. If anyone has any ideas on how to help kids sleep please feel free to share. I would be willing to try anything! Thanks for listening...

Iridescent - posted on 10/07/2010

Thanks!

Kristen - posted on 10/07/2010

Hi Amy! Appreciate your time and efforts!
Kris

Amanda - posted on 10/07/2010

Hello Amy. Thanks!