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daughter just dx with Infantile Spasms

My daughter was dx with Infantile Spasms 3 weeks ago. My world has been turned upside down. She was developing so normally and was just a happy, easy-going baby. All of the sudden, I noticed she made some unusual movements. I videotaped it and showed the pediatrician. She immediately referred me to a neurologist the next day. 4 days after I noticed the first spasm, she was admitted into the hospital. The next 30 hours were the longest 30 hours of my life. She had 2 EEGs, spinal tap, blood drawn, iv started, and an MRI. That is a lot for a 6 month old baby to go through. The EEG came back abnormal but the rest of the test came back normal. She is currently getting a daily injection of 80units of ACTH. She has been on ACTH for the last 20 days and her spasms and clusters have been getting worse. I feel so scared and lost. Any advice would be greatly appreciated. HELP!!!

Comments

Re: daughter just dx with Infantile Spasms

My daughter was diagnosed when she was 8 months old. She is now 18 months. I felt everything that you are feeling. It's a lot to take in during a devasting time.

My daughter was on ACTH for 6 weeks. I didn't allow myself to go online to look up information during that time as I wanted to stay positive. The information my doctor gave me was very grim and uncertain as to her outcome. The "not knowing" is the hardest part for me still. I think doctors are going to give the worst case scenario. Hopefully, your doctor is giving you a glimmer of hope, because there is hope. Please hang onto that. In my case, this nightmare pervaded every thought I had for quite a while. Miracles do happen, the unexplained does occur and people do beat the odds. I know how I felt in the beginning of all this and remembering those things did give me something to hang onto.

If you are ready to hear more about Infantile Spasms, I will certainly share our details with you. I had to wait a bit until I could actually believe that this was happening before I was ready to hear more

Re: Re: daughter just dx with Infantile Spasms

My son was diagnosed with IS at 4 month old. He was progressing wonderfully and we also video taped his spasms. We have gone through exactly the same proceedures you are. I know exactly how you are feeling as a Mom. You are not alone. IS is a very scary thing. The not knowing the future is the worst! I know God has a plan for us all I just wish he'd let me know about his plans for my son. Tommy was also on ACTH for 4 months. It did not work for him but it has been very sucessful for other children. My son is only a year old. I am by no means an expert but if you need any advice or just need to chat feel free to email me at zeets30@aol.com. Good luck to you and your daughter.

Re: daughter just dx with Infantile Spasms

My daughter is now 17 months & was diagnosed with Infantile Spasms last month. My husband & I kept seeing her jerk as she would awake from her sleep. She would also drop her head in the middle of playing with toys in the floor. We were so scared. Her neurologist performed a EEG, and a MRI. The MRI came back normal, the EEG was abnormal. She went in the hospital for 3 days for the video EEG in which the doctor diagnosed her with Infantile Spasms. She has been on ACTH for 1 month now getting the lowest doseage possible. I have only seen two "fainting episodes" while on the medicine. I did alot of research on the medicine, and found it does have alot of serious side effects. Recently she has broke out with a yeast infection on her face, in her nouth, and in her scalp. I never thought yeast infections were in those area. She has gained so much weight from the medicine & is VERY irritable. We have went yesterday for the second EEG to see the result of the medicine. We received a phone call early this week from a metabolic/genetic doctor telling my husband and I they have found what was wrong with our daughter. We are just awaiting next Monday to get the answer. My biggest question will be if infantile spasms and the metabolic/genetic problem will be related. I would love to help anyone with any questions! Keep our daughter in your prayers.

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