Another step closer

Fern - posted on 10/29/2010

Yes spasticity will cause children difficulty sitting up, walking, swallowing, etc. But it can also come from weakness in the jaw, trunk, etc. So your son needs to be evaluated by the proper therapists to identify what the problems are. I am a nurse, but also a parent of a two children who have had speech delays that were partly due to weak muscles in the jaw and trunk that effected their ability to sit and do certain physical activities! I agree with the comments about working on the swallowing issues. Both my sons were able to eventually overcome the swallowing problems and muscle weakness. I would also suggest that eating problems are often sensory disorders! Both my sons suffer from sensory problems that complicated their eating issues.

Fern - posted on 10/29/2010

I am sorry this is so difficult for you! Its hard as a parent to see your child suffer; there is no answer to why it happens to some and not others. But I can also tell you from experience that asking why is simply a waste of your time and energy, because you won't get an answer. The question isn't why, but how you deal with this. And the first step is a level of acceptance that there is a problem and figuring out how to best help your son. Its all about your attitude and how you teach him to deal with his limitations. He is looking to you for strength and an example of how to get through this. Show him your love and compassion, but also that he has what he needs inside to get through this. You have the strength to do this, we all do. Sometimes it seems we don't have the strength, but its in there. Just keep at it! The answers about what he has and what he needs for treatment are there too, but you have to keep pushing the doctors to be completely honest with you. I suspect they haven't told you because they don't know! Doctors are have terrible egos and don't like to admit when they don't know something. I am betting they are just as frustrated as you are!!! Hang in there, it does get easier.

Rebecca - posted on 10/27/2010

Hi Jes,
I have literally been in your position...many times. When things get to the point where you feel overwhelmed feel it. By this I mean don't keep it bottled up inside you. I sometimes need to have a good cry in order to be able to move forward. This is not a bad thing (& is normal!). Being a parent of a special needs child is a full time job!!! As for the many appointments I try to schedule them for early in the morning or the latest in the afternoon. That way (work/school wise) my husband has to either go into work a little late of leave a little early. The same goes for taking Elijah to school a lil late or take him out a lil early. As for the questioning of WHY???? I wish I had the answer. I go through this all the time. Why him/us??? In the end I am reminded that I am truly blessed to have my son. He is such a happy boy and truly touches those he comes into contact with. I sometimes think our children teach others invaluable lessons!!!!! Wondering what City you live in? NYC has great EI services. I hope this has helped.
Rebecca
PS Therapy (for yourself) or parent support groups are good. I do both :)

Jenny - posted on 10/27/2010

My son also has spasticity in his legs. We are doing Hyperbaric Oxygen therapy now. If you get a chance, look into it for your child. It is lessening the spasticity in his legs. We are only 17 dives into the therapy...out of 40. This has given me a little hope. I hope this helps.

SHEILA - posted on 10/27/2010

Yes, her gagging comes and goes but only in the sense that it use to happen every few seconds before, then every few minutes and now she can eat a meal without any gagging (sometimes ;0)

Slowly you learn what tends to bring on the gagging.With D water was a trigger as (according to Occupational therapist who did a swallow study at our home) D doesn't taste a flavour in water so tends to not regulate her suck-breath-swallow coordination well.So I try and help by learning when to take bottle away and make her pause and breath before taking another mouthful.And solids - bigger harder chunks are another trigger but she eventually manages softer chunks. The feeding for D was big struggle in the beginning as it was difficult to get her positioned, in a good seat and well-supported but she actually improved in all those areas over time. So your little guy may too although I don't know how old he is now.....but it would have been nice for me to know too that things can get better if you practice and practice with them. It sounds like you should get some help with positioning (usually a physiotherapist), swallowing (usually an Occupational therapist) and maybe feeding experience can improve for both of you :0)

D- had vision problems too, limited vision in early months, eyes crossing, looking only up and not directly at faces and so on. Again it got better with help from a vision consultant and I think naturally her vision just developed slowly and later. But positioning was a big aspect as when placed in seating and not supported her eyes would travel all over the place as she was trying to support herself, support her neck and use her vision at the same time....so not sure what help you have with your son's vision.....

Sitting up and rolling - yes the spasticity is always a barrier in any movement. But each child is affected differently. Hopefully you have a physiotherapist working with you on how to position, stretch and encourage movement in your child? But lots of things to talk about. Message me directly if you want to talk more and I'll send you a private message with my number to call if you want...

Jes - posted on 10/25/2010

We have the swallow issues too, though they cant do a swallow test because he cant sit up. Yes he needs fed, cant grasp food or utensils. We're starting baby food again, but with it brings a lot of worry and stress, the gagging tends to bring on seizures. Seizures and feeding dont mix well ! Of course thats pretty obvious lol. Does her gagging come and go? I find his feeding problmes get better and worse, as does his eyes. I'm just really not sure anymore, its all very confusing to me. Would the spasticity give problems with sitting up and rolling over or is that another issue all together?

SHEILA - posted on 10/25/2010

Hi Jes, so sorry to hear what you are going through. I remember all the turmoil, chaos and anger in facing the reality of our child having a disability...us having to deal with it and so on. The magnitude of it is sometimes overwhelming, easier to deal with it day by day. Although I still find it hard to look at other children and families with "normal" children without feeling a pang of envy. But I walk myself through it and try not to let what I feel affect what I can do for my child. And I'm sure you have your own strategies and successes....

My daughter also has spasticity in arms and legs and this sometimes affects swallowing and she gags when she swallows (not sure if this is the case with your son as well). We were nudged towards a g-tube but stuck with feeding her manually and she got better (yes, they can actually improve with training) at swallowing and gets her nutritional need fulfilled. But yes, it is a lot of work for us as she needs to be fed and can't grasp food or utensils by herself (same issue with your son?). I am glad we stuck with it as it seemed like it was a downhill battle.

So best of luck to you and your son and I hope you get the answers you need. My daughter is now 14 months old and we live in the BC area. Feel free to contact me if you need someone to talk to.

Iridescent - posted on 10/22/2010

I'm sorry. We're having a similar path...totally different problems. One of our children is getting a feeding tube (g-tube) on Nov 4. I found a link I'm talking to the doctors about, instead of 7 different severe diseases, maybe he only has one, and the rest are just symptoms, and there may be a better treatment. I always research. Always! And often, when it feels right, it is. Doctors don't have the time to sit and look things up, match symptoms of rare diseases over and over to compare; parents do, but are often unable to from lack of understanding and education. Combining your efforts helps both of you, so I'd suggest you try and find the cause if you can, and bring a list of possibilities with you. Some, the doctors will say immediately, "this can't be it, because x". That's fine! Others, they will say, "let's run the test". One day, you'll be right, or your doctor will be there with the answer.

This is our second child to get a g-tube. We were prepared that he would need one when we went to his appointment last week. We thought maybe NG, temporary, let his body heal and go back to regular food. I started crying when she said he's never going to get better, so there is no purpose in NG. I didn't want this for him. I still don't. I told my husband we will be doing a mini photo shoot of his tummy without a button the night before the surgery, because I don't have any of the perfect tummy pictures of my baby girl, and never will; they will all show her scars, tubes, ports... I just want to have the pictures. He was perfect once. What happened? We just don't know! I honestly think I found what our little guy has earlier tonight... I'm going to call his specialist on Monday, leave her a message, ask her to check into it. He has enough symptoms to diagnose it honestly. And we can schedule some of the tests he'd need while he's in the hospital for his tube, if she's willing, and they're prepared. The treatment for the one disease is better than trying to treat everything he has separately - g-tube and nothing else.

I hope things get easier for you, too. I don't know if it ever will, for either of us.