New to Special Needs Group

[Mamasota26]

Hello all. My name is Stephanie and I recently had a son, Dominic, who may be a special needs child. I say this because when my son Dominic was born, he got very sick a week after his birth. He wouldn't eat, was very lethargic, and developed this quickly spreading rash all over his whole body. We took him to the doctor who told us she thought he had a bacterial infection. So we took him to children's emergency room and they did all kinds of tests, including blood tests and a spinal tap to try and figure out what the culprit was. Later that night after he was admitted to the hospital he started having seizures. Apparently he had a very prolonged subclinical (wasn't physically showing) seizure. At the same time he started having issues breathing so he had to go on a respirator. The next day they got many of the test results back and he tested negative for everything. They then did a cat scan and an MRI. The MRI came back showing that he had some damage to the white matter in his brain. Over the course of the two weeks he was in the hospital they did test after test. They couldn't find any bacterial infection so they started thinking that the cause was genetic. So they tested him for every genetic disease they could think of but he still tested negative for everything. After two weeks he slowly got better and was able to come home. He is now a very happy and active four month old baby who has been diagnosed epileptic, yet they still haven't been able to diagnose the underlying cause. He is currently taking phenobarbital for the seizures and does extremely well on it. I have never seen him have any seizures so the medicine is definitely keeping them in control. The doctors tell me that it is very possible that he will have delays due to the brain damage, and that he could be developmentally disabled, but they say we just have to watch and see. So far he seems like any other baby aside from the fact that he does have some Hypotonia (rigid muscles) in his arms and legs.

I'm just looking for a support group of other people that I can talk to....I'm scared half to death about what the future holds for my baby and if he will ever grow to be a productive adult. It drives me crazy that the doctors won't give me answers or a diagnosis. They only say that we have to wait and see. My doctor has told me that he has seen children that have damaged brains that are clinically normal, while others have no brain damage and are developmentally delayed for some reason. I am just holding out hope that my son will beat the odds.

[2boyzmama]

HI! Welcome

None of us "want" to be here, but nonetheless, it's a great group.

We have several brain injured kiddos here, some with HIE, some with epilepsy, some with other malformations, so hopefully you'll find some help if you need it!

[aslyn]

This forum is the best on the net, and the group here in the sn folder have been a heavensent for me. No matter what I need info on there is someone who has BTDT and everyone is truly supportive! Welcome

[anj_rn]

My DD has a brain injury as well. We do lots of therapy, but definitely understand the docs not giving clear pictures. Our neuro explained it to us like this. I can tell you when everything will be OK (there is no damage) and I can tell you when it will be vey bad, but there is a whole world of difference between the two.

Basically, we were told to wait one year post injury and then they would have a clearer picture on how she is developing. Meanwhile, I would definitely recommend OT & PT for the tone if you do not have it already.

Other than that, just know that this group is awesome and very supportive.

[Green mama]

My son was diagnosed via MRI w/ PVL (periventricular leukomalacia) at 9 mos old. He was a preemie. We saw several neurologists trying to answer those painful questions about his future, and of course few were willing to make guesses. One great neuro was willing to review his MRI images with us and "predict based on seeing 1000's of others" that our son would possible have 'mild' coordination problems and possibly mild learning issues. Everyone else was painfully vague.
At almost 2 our son shows no signs of coordination issues or cognitive delay. When he was under 1yr old he had significant delays in gross/fine motor and we had him in PT Early Intervention and he worked so hard that he seemed to overcome his delays rapidly.
My advice is to start EI services (PT/OT) if you have not already. We also supplemented w/ DHA and as he started solids added DHA rich foods (eggs, salmon). We also played classical music and pretty much did anything I ever heard or read may help his brain create those synapses that were damaged.

I am so sorry that you are dealing with these issues as well. I recall the early days of not knowing and they were hard. Hugs to you.

[Linda on the move]

I'm sorry.

I try to focus on what is going on now because the future is so fuzzy. For me, being the mom of a special needs child is a journey of trying to make peace with the not knowing.

[starlein26]

Originally Posted by Linda on the move

For me, being the mom of a special needs child is a journey of trying to make peace with the not knowing.

How beautiful! I reached this point recently and it feels wonderful.

Hi Mamasota! I want to offer you a huge hug for the path you've had to travel so far. It's not an easy one, .

My son has "brain damage". He had a large tumor removed from his cerebellum at 3 1/2. He came out of surgery unable to eat, talk or move (he was in really bad shape ). Today he is a vibrant, awesome boy ! He has made slow but non-stop progress since! He learned to read earlier this year, to crawl and pull himself up to sit on the couch and he can use the computer independently (I'm excited about this one because he has pretty severe ataxia)!

It is *nearly* impossible to predict anything when it comes to the brain and what is considered a "damaged" brain.

Don't lose hope in the unseen!

[askew]

I have a brain injured kiddo too. Mine also has PVL from a prenatal stroke. She developed Infantile Spasms at 6 months, which were instantly controlled with meds. She is 9 months now and doing great. She is definitely behind her peers, but she learns something new everyday and is making such great progress. We do A LOT of therapy. She has PT 4x a week, two different styles. One is Feldenkrais and the other does some cranial sacral work. We see a developmentalist 1x a week, and we are part of www.nacd.org which does quarterly evals and a home program that we do every day. This is a great group of parents, I am sure you will get a lot from being here as I have.

[Mamasota26]

Hey again

I forgot to add that my son has no other problems so far that we can tell aside from the hypertonia, which is more in his arms than in his legs. He is a very strong little 4 month old and can already roll over and has extremely strong legs. He seems to be like any other 4 month old baby. He laughs, he will grab toys from his mobile, he smiles, he has good eye sight, he doesn't need any supplementation as far as formula goes. He takes similac advance and he is a chubber of a baby at a whopping 17-18 lbs. Also I wanted to add that since the doctors haven't been able to come to a diagnosis they have said it is POSSIBLE that he might have had a near-SIDS experience and that the damage is due to a lack of oxygen for a certain period of time. Still, they also say that his brain injury doesn't look like one that was caused due to lack of oxygen so it still isn't a diagnosis. So it really just is a wait and see kind of thing right now. I hate not having a diagnosis or not knowing what to expect but I just have to take it one day at a time. It scares me half to death just how much my life and his life might change if he has to depend on me for the rest of his life. I will do whatever it takes and I will always take care of him as long as I am on this earth but it is just very scary and stressful. Of course as parents we want so much for our kids. We want them to have the happiest fullest lives they can possibly have. I will sure do my best to make sure he has that no matter what.

[Mamasota26]

askew

Currently we are in the Early Intervention program and Help Me Grow. The Early Intervention woman is bringing a PT with her at the next visit to start working on his physical therapy. Is there anyone else I should contact about therapy or will they put me in touch with all the right people he might need in the future??

Thanks for giving me the ideas about classical music and stuff. I will definitely start playing it at home for both my kiddos (have a 2 year old as well who is neuro-typical)

[askew]

Originally Posted by Mamasota26

Currently we are in the Early Intervention program and Help Me Grow. The Early Intervention woman is bringing a PT with her at the next visit to start working on his physical therapy. Is there anyone else I should contact about therapy or will they put me in touch with all the right people he might need in the future??

Thanks for giving me the ideas about classical music and stuff. I will definitely start playing it at home for both my kiddos (have a 2 year old as well who is neuro-typical)

Most of our therapy is outside of the realm of Early Intervention. They pay for one of our PT's and the developmentalist who comes from Easter Seals. The rest we found on our own. One of the best therapists we have is from Anat Baniel Method. ABM for Kids We have seen a lot of improvement from these practitioners. We see Anat herself once a quarter and her team twice a week. The other program I spoke of, NACD, is something we came to from other parents are we are thrilled with their perspective and program as well.

[BetsyNY]

I too have a son with PVL, d/t prematurity (27 weeker). We've also had tremendous results with the Anat Baniel Method aka Feldenkrais Method.

My son is nearly 4.5 now, and I just wanted to give you a glimpse of what our life with him is like--he does have major coordination issues, and his arm/hand coordination on his affected side isn't great--he has trouble eating with utensils, holding a pencil, etc. He also has a PDD diagnosis, which may or may not be related to his stroke--the neuro says yes, but we'll never know for sure.

BUT--he's so friendly and sweet; all of the staff at his school adore him. He's very smart; he's been able to read since he was three years old, can do basic math, and he has an incredible memory.