Need Advice on My Under-developed Son with Seizures.....

I am so sorry to hear that. I don't have any experience myself, but there are so many moms that use www.babywhisperer.com, and they have a page for posts just about health issues, that I bet someone there has some experience or could help you decide how best to proceed.

My son started having every seizure u can think of when he was 2 we also noticed late development when he was little. I know how u feel it is so scary to watch ur baby have one. But with my son it got worse before it got better. Now he has out grown them he is noe 10. They did eeg's to test his brainwaves. They still dont know why he was having them. But as ur baby grows they need to change or increase his meds because my son did the same it could be they r giving him to much or to little. If they do give him to much he will act like he is drunk. We seen Dr. Zeleya in peoria illinois. I hope ur child gets better nd it will be a long rode but they have support groups nd it helps. If u need to talk I could tell u all day what to look for and just talk also they wont tell u but a lot of people including my son can not take certain meds like allergy meds because it triggers seizures

Hi S.,
I am so sorry that you and your family are going through this. I really do not know what to say but I did and will continue to pray for your son and family. God Bless you and may you be strong. I hope all goes well! Perhaps a support group might help?

I don't have any direct experience for you, but just wanted to send some hugs your way...What a scary experience you must be having.

I think if he is continuing to do poorly I would probably call CM and let them know that you have concerns that you don't think should wait.

I might also do some on-line research to see if there are any local support groups - or ask at Mercy...I am thinking and Epilepsy group might be one that would help you. Even if they can't help you with specifics for your son's possible dx- I am sure they can help you with coping with his various symptoms. They may also help you with 'jumping through the hoops' - of the system.

Good luck to you!

Sorry to hear about your son. My nephew who is 3 months old was diagnosed with Homocystinuria. It is a genetic disorder that causes seizures and if not controlled can lead to mental retardation. I don't want to scare you, your son may not have this. I am not in the medical field so I am no expert by any means. It basically has to do with the liver not releasing enzymes or visa versa. They had to put him on a special formula and have to give him enzymes. Children or people who are diagnosed have to be on a special diet for life. Basically it is vegetarian and no dairy products. The Mayo clinic has taken an interest in him because they are stumped by his genes. They have found two genes that are unidentified. They want to do an article on him. Look up Homocystinuria on the internet to get a better idea of what it is and the symptoms. I would think that Children's Mercy would have tested him for this. As far as them waiting until February for further testing is to me unacceptable. I would either go to a different pediatrician or demand they do all that they can do NOW! You might change his diet, it might help with the seizures. Best of Luck and you will be in my prayers.

Stacy,

Have they said anything to you about epilepsy? A friend of mine has a son about 8 now i think and he has this same thing, i will ask her if it is ok to give out her phone number and you can call her and ask her about this to make sure that i am right on this. She can also get you in touch with a support group to give you ideas how to help with this. If this is what it is. If you are interested let me know, i will be speaking with her in just little while. In the mean time we can pray for you and your child.

C.

I am so sorry. I cannot begin to imagine how hard all of this must be for you.
I noticed someone recommended the Mayo Clinic. However, if distance is an issue for you, I highly recommend Scott White in Temple, Texas. I went there about 11 years ago to get second opinions on some serious health issues - one of which was a neurological disorder. I was 22 years old at the time so I didn't use the Scott White children's hospital. We went to the adult version (university medical campus clinic) instead. I spent about a week there. They ran me through a full battery of tests, doctor evaluations, etc., etc. Here is a link to their child neurology department:
http://www.sw.org/web/SW/patientsAndVisitors/iwcontent/pu...

I was pretty sick & it's been awhile so I don't remember a whole lot of details, but their diagnosis was correct and they are a great resource. I highly recommend them!

Also, I doubt you will need this, but just in case, if your child needs a neuro-opthamologist (vision problems related to neurology) then go see Dr. Brad Farris at Dean McGee here in OKC. I used him also and he's OUTSTANDING! People travel from other states because he is so highly regarded. Here is a link to him:
http://www.dmei.org/index.php?pID=209&subID=150

I wish you all the best and will say a prayer for your family.

Hi S. i'm sorry u r having to go through this i couldn't imagine what you r going through. My biggest ? is why r the doctors waiting so long for the follow up appointment the end of Feb. is such a long time from know it sounds to me that the doctor's should be more consern and get more test right away. They already know the medicine isn't working isn't there something they can do before the end of Feb.

Hi S.,
Have you thought about going to a different hospital? I have an 11 year old that has cerebral palsy, seizure disorder and asthma along with being LD. We go to St Louis Children's Hospital. We started at CMH when he started having seizures around the age of 2. I did not like their neuro department at all. When my son started having seizure they weren't going to run any tests at because they were convinced that it was one time thing. When we finally got the test ran, we found out that he was having several seizures that we couldn't see. In the time it them to run the eeg he had a total of 15. At Stl Children's they are totally awesome. They are very willing to work with us in finding something to help control his seizures. I highly recommend them the drive is well worth it. Feel free to contact me if you have any other questions I would be glad to talk.

my heart goes out to you (BIGHUG). I think it's time to find another dr to go to. Do some research. Don't be afraid to buck the drs when when they throw up their hands. I know it's hard to do, as I had to do it for my son. But I know you can do it! Do talk to the mayo clinic. Have heard a LOT of great things about them. You might also talk to the Children's Hospital in St. Louis. Awesome hospital. I hope this helps you and I'll be thinking about you and your son.

While you are waiting you should consider contacting "Oklahaven" in Oklahoma City. It is a Chiropractic based setting for children just like you are describing. They treat all kinds of problems with excellent success. Dr. Bobby Docher is the head doctor there and she is marvelous. She has also trained many other doctors using a low force, gentle technique. They can probably send you an informational DVD or something equivalent to that. Don't hesitate. You are exactly right in being concerned about the progressive deterioraton that will take place over the "waiting period".
Good Luck

I don't know anything about seizures, but i do know alot about prayer. My husband and I will be praying for you in this trying time; praying for the doctors to find some relieve for your precious son; God Bless your family

Stacy ~ I just wanted to say hang in there. I don't know if they checked your son for cerebral palsey or not, I have a friend who's son has it, and alot of the symptoms seem similar...Just a thought...I googled it and this is one that popped up:

http://www.about-cerebral-palsy.org/diagnosis/index.html

You are a very strong woman, and I pray that you get the answers that you need.

B.

S., how are things going with Jariah? Have they done the genetic testing yet? I started browsing through questions looking for other moms with a genetic disorder issue, because my son is on the final round of confirming that he has one. Your son's symptoms sound like a lot of the symptoms I have read associated with 3mcc, a genetic disorder. (the one that we are having tested) I hope that they were able to shed some light for you at the end of February.
Take care,
A.

S.,
I really don't know anything about what you are going through. I just wanted you to know that I will be praying for Jeriah, you, your entire family and that the doctors would have wisdom is diagnosing and treating your son.
Stand fast,
M.

At my Chiropractor's office, I read about another child who had this exact problem. After Chiropractic treatment, the seizures went away & he was able to begin developing normally. I go to Dr Ryan Hanson in Edmond. He's on Boulevard between 15th & 33rd. His number is ###-###-####. He's really great & treats lots of children (including his own). He will be able to help your son. Feel free to contact me directly if you want more information on Dr Ryan.

Dear Stacy,
I do not have any expertise on dealing with seizures,but I was touched by your letter and just wanted to say that I am so grateful to see that you are a Christian. God can be the support and strength that you need!! I will be lifting you up in prayer...please come back and update us so we know what you find out about your precious little boy!!!
Remember...God doesnt promise us a life free of storms what He DOES promise us is that He will be there to walk through those storms with us!!
In His Love,
R. Ann

Your story touches my heart and my prayers are definetly with you and your family. I don't know much about seizures past epilepsy and I am assuming that was ruled out. As great as children's mercy is you should consider talking to your insurance about going to the Mayo Clinic, it is in Rochester MN. They offer free or reduced housing for families while they have a patient there. My nephew spent a year going to Children's Mercy with no diagnosis, within a few visits to Mayo's they had a diagnosis (his problem is genetic as well). Good Luck and may god soon bless you with an answer.

As the other Moms have said, BIG HUGS to you and your son, as well as prayers! As good as Children's Mercy is, they take TO LONG with follow ups! You need to get it in their heads you can't and DON'T want to wait that long! Also, try a different pediatrician maybe as well for second opnions etc... If you're willing to travel, as the others have said, you can try the Mayo Clinic, or even St Jude. Somebody somewhere is able to find out what is wrong, and hopefully they can do it fast! As fast as your son is progressing in these seziures, they need to be delt with now before they get any worse. As some of the other Moms have said, stand your ground, and demand answers now! I know it does take some time for those answers, but Feburary is to long of a wait! I hope and pray you and your little boy get some answers soon, so you know what is going on, and how to take care of it! Let us know if you need anything!! Good Luck and prayers!!

I don't know anything in regards to the underdevelopment that you refer to, but I am epileptic so I have some knowledge of seizures. I have taken various medications to deal with my seizures over the time that I have had them: Depakote, Topamax, Lamictal, and Diazapam. Something that I have always had to watch for is seizure triggers. For me those are usually sleep deprivation and bright lights. That might be something that you look for and try to remedy. I wish I had some solid advice to give you, but over my life I have had a lot of ups and downs as far as my seizure control is concerned. The only thing that I can tell you is that there are millions of people that live with a seizure disorder everyday and live very happy and fulfilling lives. If you ever need anyone to vent about this please don't hesitate.

S.-
I have a good friend of mine that may be able to give you some guidance. Her basis of knowledge is extensive and on a personal level as well ( her daughter). I e-mailed her w/your query and below was her response. If you would like to speak w/her directly, please contact me and I will put you in touch w/her. She is an amazing woman and I think she could give you great knowledge. My heart and prayers go out to you and your sweet boy. C.

How long do the seizures last? Was development normal until the first seizure? If the delays were there first, it would make me think there is another cause like a metabolic disorder or something - not just epilepsy. Was the first seizure related to fever? Are there other issues besides the delays and seizures? What city is Children's Mercy in?

I have more questions than advice, but the child could have something more than epilepsy since the delays are so severe already. Unfortunately it could take a long time to figure out exactly what the cause is - in a lot of cases they never do figure out the cause of seizures - I wish I could say something more positive about that.

I think the most important thing is to get as good of seizure control as possible. 1-4 seizures a day, especially if they are prolonged, is really worrisome in such a young child. The brain "learns" to seize the more it seizes especially in such a young developing brain. The seizures can cause faulty wiring as the brain in wiring up, which mostly happens in the first 3 years of life.

What do the doctors say about how long it would take the current medicine to get to a therapeutic level? If it is already at a therapeutic level and it is not working, maybe something else needs to be done. Maybe a second opinion is warranted.

You need to clear your home of toxic chemicals immediately, he may be having a reaction to products you use that you don't realize are harmless. I work with a wellness company who has helped many kids in this situation. Let me know if you would like the details too. Good luck!