Just found out my baby has hypertonia

Hi all, Im kinda new here and havent posted much but I feel like I need to vent here just a little.

Let me tell you a little about myself before I get into the news about my daughter. I have 3 kids. Jacob is 6, Kiley is 4, and Lainey is 1. Jacob has cerebral palsy and we suspect he has a syndrome called angelman's syndrome. Jacob is pretty disabled and requires pretty much total care. So, its like I have two babies and a 4 year old (except one baby is 52 pounds and more than half my height!) Im also going through a divorce right now. Things can get stressful around here, but, for the most part my life is wonderful and Im truly enjoying being on my own with my kiddies.

Ok, so here's the story about my baby, Lainey. She turned one on July 22. She's such a mama's girl. She isnt walking yet, which Im not to terribly concerned about, however, she isnt crawling either. She sort of pulls herself along on her tummy. She has just recently started to try and pull up, but she can only make it to her knees. Ive been trying to not worry about all this. I know we all develop in our own time, but sometimes its hard not to worry, especially since I have special needs kid. So, Friday I had to take Lainey to the doctor because she had an ear infection. The doctor wasnt there so I saw the nurse practitioner, while I was there she asked a few questions about Lainey not walking. This morning I got a call from the doctors office saying that he wanted to see Lainey today about her not walking. So, I take her in and he watches her pull herself around and did all sort of things to her legs and arms. He said she is hypertonic. Hypertonic is when your muscle tone is spastic or rigid. He said he wants her to do physical therapy for 3 months and if she doesnt improve then he is going to check out her brain and spinal cord to find a cause for her hypertonia.

So, Im feeling kind of sad and numb. Maybe she will improve and start walking or crawling in the next few months, but what if she doesnt? What if I have two special needs kids? Thats okay if I do, I love my kids more than anything on this earth, but why do my wonderful perfect babies have to have special needs? And what if she's fine and improves and all that, but now she has to grow up hearing stories of when she was a baby and couldnt walk and had to have therapy. I can just imagine how that would be for her, she might worry she's retarded like her brother.

I dont' know, Im just rambling. I can't talk to my family about it because they overreact to things and I can't let them see that Im upset a little about this. I just need someone to talk to.

 

you sound like you are a strong person with everything you have mentioned that is going on in your life. If this therapy will help her then do it and I don't see that it will harm so I say keep being the strong positive sounding lady that you are and all will be well and vent anytime you need here!! good luck with it all and let us know how you are going.

 

Oh, sweetie. I'm sorry you are going through so much. Hugs to you and your sweet babies.

IT'S OKAY TO FEEL THIS WAY!!!! We are all entitled to a little "feel bad for mama" time. Don't feel bad for feeling this way.

I have a different scenerio. I have four kids. THREE have been dxed with ADD or ADHD, two are on meds, my oldest has Tourette's Syndrome and was also hypertonic when she was a baby, she met her milestones OK, but was pretty rigid and hard to cuddle.(She's 19 now) My youngest who is 5 now, has Tourette's like symptoms, but only usually during and after a viral infection.

I know how you feel (well none of my kids needs round the clock care, but I know about the "why me" feelings) and it is hard. You do the best you can, and it seems like you get shit on no matter what. I KNOW what you are feeling.

I don't really have a lot of advice, except to learn infant massage for both your special needs kids (and the other ones as well.) Both CP and hypertonia respond well to the proper type of massage, but have a professional show you and do the first few sessions. There are different tecniques for under and over tonic muscles and you don't want to use the wrong ones.

There is help and the mamas here are really wonderful. We have a great support system here.

WELCOME.

(I am also the Moderator of the Parenting Forum, and a site supermod, so I also officially welcome you!)

Love and hugs,

Maggie Sugar

 

Thanks Ladies. Im feeling better today, I guess yesterday was just one of those days. I was afraid I scared you all off, it being a subject not many people can even begin to imagine.


Thanks for the massage advice, I will definitely be looking into it.

 

I am glad you are feeling good!!!

I was thinking about this and my friend is an OT who works with ubs and I know she has her head screwed on right so if it is ok with you I will ask her what she would do if you were here, she might have some good ideas!!!
and massage is good for everyone so I figure if you even get the non theraputic sort for your bubs they will benefit (and one for you too I reckon!!!)

 

Welcome to the forums!

Don't feel guilty for feeling bad.

I am a single mother and I have intractable (medicine doesn't fix it) epilepsy. One of my kids has epilepsy, too. I have found that forums on the internet for people with epilepsy and parents of children with epilepsy have helped me so much. I am able to talk to the only people on earth who really understand what I am dealing with. We ask each other questions, share interesting information with each other, ask for and offer each other moral support. There are even threads in which people just vent to blow off some steam! It's really wonderful.

I know that you're very busy, but you might really benefit from finding similar forums online where you can talk to parents of kids with the same special needs that your kids have. Now that I have this resource, I don't know what I would do without it.

Hang in there. You're so strong. You're dealing with so much. Be optimistic. It sounds like your daughter's problem might be temporary.

You can come here for support, too.

When I'm feeling the way that you are I remind my self that 1) I have accomplished so much and overcome such challenges. I'm strong. 2) This will pass. There have been other times when things seemed overwhelming, but they're memories now. I'll get through this, too.

Think about that. You have accomplished a lot. You take such good care of your kids. It's okay to give yourself some credit.

Take care.

 

Thanks for the support Levi. My son has epilepsy too, I know how tough and scary it can be. Thank goodness he hasnt had one for several months. You're right about the groups online for parents of kids with special needs. I used to belong to one before I got divorced. I really need to check back into it.


Stephaniesomewhere that idea about your OT friend sounds fine with me. I'll talk all the help I can get.

 

Aww sweetie, great big hugs to you MamaKooKoo. You are a strong, strong woman and should be so proud of yourself as a mother. Your children are very fortunate to have you in their lives. Whatever the future holds, you will be able to handle it because of your love for those precious kids.

Lots of support and admiration...