Coopersmoma and ACH

[didmyheartgood]

Hi!

I know you and Cooper have been through ACH(Arkansas Children's Hospital) just as Brace and I have..

I was wondering do you take Cooper to the genetic clinic there? Dr. James Gibson?

Would love to talk to another mom in Arkansas!

Kim (mom to Brace and Cade 4 years old)

[coopersmoma]

Kim, No, I don't take Cooper to the genetic clinic. I asked my pediatrician if he thought I needed to take Cooper and he told me he didn't think that he needed to go. Do you take Brace? If so, what do they actually do? I was told by someone else here in Jonesboro that she takes her daughter to a genetics clinic. I would like some information on this. I am really new to all of this and it gets overwhelming at times. Let me know what all you do for Brace and if he sees anyone else at ACH that we should be seeing. I love ACH and if there is a physician there that we should be seeing I will be more than willing to drive to Little Rock. Didn't you tell me you lived in Hot Springs? I would appreciate all the information and help I can get. Thanks a lot.

[didmyheartgood]

Hey! Sorry it has taken me so long to get back to you!

You can email me at [e-mail] if you want to talk more.........I don't mind posting it for all to see, but didn't know if anyone else was interested in our Arkansas Hospital talk..LOL

As for us, yes, we do live in Hot Springs. Brace (ds) and Cade are now 4 1/2.....YIKES!
We do take Brace to the genetics clinic once a year. ACH are the ones that "offically" told me Brace had Ds, as our hospital here was not equipped to the genetic testing. Both of the boys were flown by the Angel Flight helicopter right after birth to Children's.

I am like you, I love ACH.. I have never had a bad experience there. If it weren't for them, Brace wouldn't be here today, that is for sure. From the 4 months we "lived" there, all the way through the 3-4 times a year appts we have now, everyone from the Dr's to the cleaning ladies are just great people.

The genetics clinic basically just follows Brace's progress over the year. They are a wonderful source of information for us, as far as new therapy techniques, latest studies involving kids with DS, etc...I do jokingly say that it is our "once a year appt, for them to tell me Brace still has DS." But I really have utilized alot of the information I receive from them. Dr. Gibson is a wonderful man. Very kind and very knowledgeable about DS. I tried very hard to have most of Brace's Dr's (specialists included)here in Hot Springs. But there are some things that ACH are just plain better at.Genetics is also great to have with any referrals you may need inside the hospital. You don't have to go back to your PCP to get it and Dr Gibson is very faithful about keeping your regular Dr informed. If he gives you a referral, he will send a letter to your Dr to explain who and why.

One thing I will never forget when the boys were born. Our "old" Dr here in Hot Springs (no longer, for many reasons with Brace) put Brace on pediasure and Lord knows what else when he was a baby, as he was "way below normal" on the growth chart. I listened, assumed he knew what he was doing and gave Brace all this stuff. When I went back to ACH for his genetics appt, Dr Gibson was just shocked with all the "supplements" Brace was getting. He pulled out a growth chart for Children with DS,(the other Dr. used the "standard" growth chart) and Brace was exactly where he needed to be, if not even a little on the BIG side... and Brace was a six weeks early preemie TWIN that only weighed 4lbs 12ozs at birth...Guess the supplements worked huh? He would have been HUGE, if I had kept up with that advise.. LOL

In addition to the genetics clinic, which by the way is only a once a year visit, we also go to the ortho clinic there. AFO'S have been a huge debate between the Dr's and therapists here. I opted to go to ACH to get my third and final opinion, as Brace has been there once before when it was time for his "neck xray" and they were wonderful. Brace also goes to the dentist at Children's twice year. (Their dental clinic only serves children with special needs) I know these appts are far off in the future for you with Cooper, but it will be here before you know it.

We also went through the ENT clinic there orginally. Brace had all his hearing tests done there, but I have since found a ENT clinic here in Hot Springs that does as well as Children's,in my opinion, so we no longer go for that.

I know how overwhelming all the appts can be in the beginning. I felt like I was being pulled in a hundred different directions and that the expectations of me were just too high at times. It does ease up and you know Cooper the best out of anyone. Remember that. I am here if you want to talk, vent, ask, share whatever. I will help in anyway I can........Kim

[coopersmoma]

Hey Kim, Sorry it has taken me so long. I moved over the weekend and just now found all my computer stuff I am still trying to get everything organized!! I have called our Ped. and asked for a referral to Dr. Gibson. I actually called his clinic on Tuesday and got some information. Thanks for telling me about it, I am really not sure why my Ped. hasn't suggested this but oh well. Thanks for all the advice and look forward to hearing from you soon. If there is anything I need to know before I go see Dr. Gibson let me know. I am looking forward to the appointment.