my son is 2 he had meningitis at 17mths now he cant sit or walk or crawl, does anyone have any ideas to help?

Question

medical and physio help isn't great where we live - all the dr's say just wait and see - , he has brain damage but no-one can tell us how any of it does or will affect him, we are flying blind right now, my kid is also deaf now and has lost all of his speech, i would really like suggestions from anyone who has heard of similar situations because right now i am doing everything i can -massage physio exercises trying to learn and teach signing etc - but my son's life is horrendous and i need to help him get mobile again so that he can have some kind of life, he is trapped in his own head waiting for other people to guess what he needs all the time, i think he must be very lonely and frustrated. I don't believe in wait and see i think he needs serious help now i just wish i knew what i was doing or had some experts on hand or the money to get my son to a brain injury specialist or something. This is a parent's worst nightmare and i feel utterly helpless for my poor child. Any ideas?

Answer 1

I have 3 children with varying needs and they are now nearly 7 yrs old and still the drs in our health authority are saying we should wait and see. The boys were very very late in most of their develpmental stages but are slowly getting most of them.

However, my advice to you is to look to London. Go seek out the experts in specific fields. This is where we have had our only successes. If you can, pay. But only for the best. Harley st, for instance, is not always the answer. Find the best you can through any means you can. Ask other drs. Speak to charities. Do hundreds of internet searches as we did - and still do.

In the meantime, have you heard of PECS picture cards? and also Portage. Ask your Dr about both of these. Your son may find both tremendously helpful. The picure cards are a way of communiating his - and your - needs to each other without words or specific movements. Portage is an early education scheme which really helped us tho I dont know if it will be suitable for your son and his own condition.

I really really understand how you are feeling. The general medical feel is wait till the family falls apart then go in and pick up the peices. They dont do support of or preventative work. They wait till no one can cope any more. Dont wait for them to step in. You will be too far down a very depressing road by then. Take action yourself. Arm yourself with as much info as you can. Educate yourself in the areas that affect your son. You will be the expert and you will know who to go to for help. It still will never be easy but having control helps a hell of a lot.

You are in my thoughts. I really know how it feels.

Answer 2

I'm so sorry to hear about this. The advice to so nothing and 'wait and see' doesn't sound right to me.
I used to work with children and adults with severe disabilities of all types. One of the treatments then was to give stimulation of all kinds, as it helps develop the mind and muscles. So for example, people were put in a 'sensory room'. They'd be placed on a comfy beanbag and there'd be lights playing on the walls, music and sounds, and toys and furniture made of different fabrics, materials and colours.
Sensory stimulation was seen as essential for development. As well as that, chairs were made in such a way as to make children sit correctly using their own muscles.
If you're not getting help from the NHS that you and your son are entitled to, do 2 things. First, complain - not to the g.p. but go above. Go to the local press and tell them, someone reading the article may be able to help. Go to your mp and don't be fobbed off and don't quit.
Secondly, get on the internet and start searching. You can't be the only parent in this situation. Find other people an get support and advice.

Some activities could include; warm bath with bubbles and toys - you can sit in the bath with him. Massage - you can learn how to do that. Toys, those toys that hang off a frame while they lie underneath must be a good idea. Anything bright and moving that gets his attention. Posters on the wall, change them often. Put things into his hands and help him explore different fabrics and surfaces.
Best of luck to you, I'll keep on searching and see if I can find anything else.

Answer 3

Get in touch with as many disability groups in your area as you can. Even though your child is in need, you need the support too - talking to parents in similar situations might help.

You need to really push for support - it is out there but you really have to fight for it. 'Wait and see' isnt good enough. You should push for respite care, speech and language therpay, specialist consultations etc - be your social worker`s worst nightmare , that is the only way you will get what you want.

Resources like PECS, soft play areas, and other specialist help is out there but sadly these kids never get the help that is on offer. The only way that your son will get half of the help that he needs is if you fight damn hard or pay the odds (which is a terrible injustice).

It must be extremely tough for your whole family right now and I hope that you all get the support you need.

I worked with disabled children for years, who despite their difficulties led inspiringly happy lives, I am sure that your son will give you many reasons to stay strong as he grows up. x

Answer 4

Start by asking your local school district or regional center (in CA). They can refer you to the proper place to get some testing done and get some help for you, free of charge. It sounds like maybe some physical therapy, occupational therapy, speech, and other services may be needed. The school district special education office may not do anything with your child until he is 3, but they can refer you to someone who can. The sooner you get your son in for some services, the better you will both be.

Answer 5

The other answers say it all but there is an early sign language that may help that Down's babies are taught to help encourage speach.

Keep on at everyone, keep pushing, Be strong.

And for those moments when it all gets too much, tissues, chocolate, wine and a copy of Beaches. Clears the emotions out fantastically and you can pick yourself up and push again.

Answer 6

contact your local health department, they are responsible for developmental help for babies and toddlers. some states have a Help Me Grow program for this age group (or a program like this), all states have a CHIP Child Health Insurance Program, maybe WIC, these may help now. Or try calling your local school administration office of special ed. My son has hearing loss, and it was amazing what they could do at a young age (started at 18months), his speech therapists said so much would have been forever lost if we waited till school. public schools start after age three, but don't wait till then. it will be harder the longer you wait.

Answer 7

Everyone here is giving you good advice. Knowledge is what gives you what you need. This is a total new thing for you that you know very little about, so arm yourself with as much knowledge about this. Spend some time researching and find some online support forums/groups that deal with this type of condition. This way you will be able to connect with people who have so much experience, resources and support to offer you to help you get ahead start on what to do for him.

I think it's a good idea to also contact the school system in the special education dept. to get a heads up on what to expect for him when it comes to starting school and to receive information and resources that are available out there.

Maybe also look online for children charity hospitals that are out there and see if you can qualify for anyone of their free medical services.

Have you also contacted the Social Security to find out if you qualify for disability income and medical insurance for your son? If you do, that can greatly help easen the stress on your finances.

Try the Yahoo groups http://groups.yahoo.com try using different types of keywords to find one or several groups. Be persistant and focused on what you are going to get and then you will get what you need! I will also pray for you that you will receive all that you need to know and get for your son.

Answer 8

This is going to be a very long process for you and your child, but please remeber one thing. You are the most important person, and you need to ensure that you're able to take time out in order to recharge your batteries. I know that this may sound selfish, but you will have a long haul ahead, and it is important that you remain calm and energised for your son's sake and your mental well being.

Firstly, rehabilitation, contact NHS Direct who are great at pointing you in the right direction for support groups and healthcare services. Depending on where you live you should also get help from social services as you are going to need support and advice regarding your home and changes that you may have to make to ensure your sons safety and your sanity. Also, look on the web regarding "Tactile Learning" surfaces. The support and treatment is out there, you just need to look in the right place.

Secondly, YOU - NHS Direct should also be able to give you some numbers for respite care. This does not mean putting your child in to care for the odd day or week ............... it actually involves carers coming to your home and allowing you (and partner) to get out and have quality time. They are also a shoulder to lean / cry on, as you are going to get frustrated with yourself, your son and the system.

If you get this informtion and start putting things in place you will be better equipped with the challanges ahead.

Good Luck

http://www.ndcs.org.uk/go.rm?id=410

http://www.meningitis-trust.org/media/S4l_campaign_report.pdf#search=%22children%2Bmeningitis%2Bsupport%22

http://www.raisingkids.co.uk/sup/sup_M.asp

Answer 9

I have a disabled son, now he's 14. You are right to identify that he needs help with mobility and communication as they are both ways to reduce the frustration he will feel.

You need to thump some tables on his behalf, perhaps with the help of a charity set up for this purpose? There are usually advocates working for the NSPCC who will take on this sort of role.....look on the internet to see if there's one in your area. alternatively contact the charities dealing with meningitis to see if they can help. contact the council to see if there's a social work team specifically for children with disabilities (there usually is).

I know just how hard it is to work so hard with your child and fight on their behalf to get the right professionals involved, but it really is worth it. We were told my son would probably never be able to jump, but you should see him on the trampoline! And he rides bikes (having learned on specially adapted tricycles). He uses symbols (called PECS) to communicate and all in all he does so much better than we ever dared hope.

Hang on in there!

Answer 10

This is your child sweetie go to a good hosiptal no matter what it takes. You need good care for this. Doctor's give the run around if you don't like what they are telling you then go to some one who will be clearer you pay them. So you got all the rights.

Do you want the health of your child to sit on deaf ears. NO!!!

Good Luck and my prayers are with you.