Forum: Children's Chronic Health Conditions

Does anyone else deal with this? We've had excellent control (about a year now) with Depakote but it has cause a lot of hairloss and the texture of what is left is like straw. We've given her zinc and selenium and it has helped but very little. We saw our epi yesterday and she suggested for us to try vitamin D in addition to a multivitamin. It may seem petty but Devon had beautiful thick hair. I'm glad that the epi understands and talked about alternatives if the hairloss becomes intolerable....

So the pedi ordered hip films and doppler u/s of the veins in her L leg based on our concerns. Interestingly the L hip was fully in socket, and the right was completely dislocated. This is a change as both have just been subluxed for the past few years. There is no explanation for the L swelling (which it still is). The radiologist actually came into the exam room and looked at her leg to see if he could see evidence of some condition (DH was there and can't remember the name :handface:)...

Dr. C and his opthamologist ( who stopped over to meet with Dr. C about Alec) was there, and they agreed there is definitely something progressive going on with Alec. They are leaning towards Mito, but also running a metabolic panel and a microarray. He found Alec's hair pattern very interesting ( he has 3 cowlicks that meet at the center of his head to make a mohawk) and very "syndrome like" so running a bunch of labs. We'll have those results in about 4 weeks, but Dr. C did say, not...

Last night Mya had another set of seizures. Then around 2 am her gas output in her ostomy and vent bag exploded. We are having to vent both bags every 3-5 minutes. It is quite frustrating. I stopped the formula this morning hoping the gas output would slow down. Unfortunately it hasn't. Any ideas on how to slow it down? I am trying to understand the gut-brain connection and her seizures. Her GI feels it is the stress of her gut causing the seizures. Can someone please explain this to me????

So we are 12 weeks into our 'trial'. 12 weeks ago we increased one of his medications. We are going to continue to increase it ever 12 weeks along with Echo, EKG and labs every 12 weeks to check progress. First check up since we started the trial and his heart size has NOT increased~ even slightly decreased!!!! But even more importantly~ his energy has come up a bit. Nothing drastic, but something that we did notice. The good days are better and the bad days are not as bad. I feel...

because I think it would be good to do an admission right now if his gi and urologist could come in and see him and do some testing while we are there. His stomache just isnt cooperating. The more food that goes in it the worse the constipation is. He is in pain and it is bloated once again. And his bladder is no better off as it is spasming so much right now. I got an apt in a few weeks to see the gi and that is first available and he will be admitted that same week for an overnight VEEG then...

We have seen the same pediatric neurologist since Weston was in the NICU (8 1/2yrs). He has his yearly appt. Friday. I called to confirm the time and she said they would see us Friday, but we would have to find another dr. after that, they no longer take our ins. Weston has BCBS primary and Ky Medicaid 2ndary. It is the Medicaid they won't take. I asked if they could bill BCBS and we pay what was left. They said no. I called the peds. office and they gave me the number to a local neurologist 20...

This virus is kicking our butts. Tyler started Zithro last night for what is now clearly a sinus infection. (today marks day 17 of high fevers). Brandon saw the ped this afternoon and is now on Keflex (QID - UGH!) for a developing pnemonia. His cough is just awful. The ped said his chest sounded 'mostly alright' but there was definately something brewing. Didnt bother with xrays or labs as he said regardless of the results he would still be starting keflex, so we just went...

I'm really worried about Molly. It is so frustrating when you have to play the 'rule it out' game to figure out what's wrong. Molly has not been herself for nearly a month now. Low grade fevers off and on (not sure if they're even true fevers....maybe autonomic?), irritability, just not acting right, kwim? At first we thought upper respiratory, so we started predinisone for a few days and it cleared right up, but the fevers and irritability continued. So we moved on to possible UTI and are...

Cade's sleep doc wants us to add melatonin to his sleep meds. For those of you who use it, what do you think of it? Can it be crushed/dissolved in a syringe?

Sorry if I've asked this before, can't remember. Do your kids det really irritable after seizures? Sometimes its worse than the seizure itself or maybe its part of the seizure.