17 month old diagnosed
AnonymousDecember 5, 2007 at 7:38 am
Hey guys, I haven’t participated in any forums because I am trying to learn and have little info to give at this point other than my own experience. I have just not found many things with information about a toddler with GBS. My son is now 20 months and is doing great. He still has no reflexes and his left toes don’t grip. Otherwise he has made an excellent, fast recovery. I guess I mainly want anyone to know my experience if someone is looking for any information about a small child with GBS. Tucker, my son, was fortunate enough to go through this at such a young age that he will not remember, unfortunately I have gone through it with him and have witnessed the misery. So, feel free to ask any questions if you are interested and I can be of some help!
AnonymousDecember 5, 2007 at 7:24 pm
Thanks for the prayers! I did read today about a younger case and learned a little. I mainly am concerned with the immunizations that all kids get on a regular basis. Also, is the likelyhood of him having another episode more likely because he was so young when diagnosed? He had nothing but a simple cold when the GBS came on. I just don’t know exactly what to do about it. They tell me he won’t have the symptoms again and that most people only have the one experience during their lives, except for some rare cases. So, how should I raise him? With the fear that this may happen again and stay away from all germs or just take life as it comes and pray for the best? We have already marked off some key immunizations; meningitis, flu…. but other than that what can I do to make his life easier? Sorry to ramble. I love him. Tucker’s mom.
AnonymousDecember 5, 2007 at 9:35 pm
Welcome jbeatty and Tucker! The best thing about him getting this at such an early age is that he will not remember how difficult it was. He may have some residuals like the fatigue after a day of playing hard, but he will not recognize it as anything. He will play the next day as much as he can and then crawl up into your arms for a hug and watch cartoons. Kids get over things so well. I would not even mention it to him but make sure it is put on all his medical records. When you list allergies I would also put right in that list tetnus, flu and pneumonia and the other boosters you mentioned. As research goes on that list might be able to be shortened. It is better to list it and have a discussion about them with your Doctors each time.
The chances of any of us getting it again is very slim and so slim that I would not let that add stress to your life. Stress can be more damaging to our systems than the chance of us getting this again. But like you said you are concerned and should be about all the shots that we get in a life time. But as you go along you will become more educated and form your own opinion. As Tucker gets better and plays harder you might see a few times he has a relapse from doing too much. We all do. He might not be able to go swimming at the beach and play hockey all evening. Then again he might be able to do more than we ever could at that age! You just have to be patient and wait and see. As far as how to raise him? Don’t treat him different! Make sure you tell him you love him every day and give him hugs each time he darts past you so he does not have to take a bath or go to bed when you say! Life with a child goes too fast and then they are 32 year old! 😮 Enjoy the holidays like they were his first! Take photos, watch his eyes light up as he takes everything in all at once. Notice how fast they talk without taking a breath because they are so happy! You have brought him a long way and now it is your turn to take that deep breath too!
AnonymousDecember 6, 2007 at 7:29 am
Thanks for the kind words! You mentioned the tetnus, and pneumonia: should he not receive the tetnus shot? He has had pneumonia before (this past summer) is their a shot for that? I am still learning about all the immunizations kids get, he’s my first, and I was born in Germany so don’t have the US experience! Where could I go to research that? I will try on my own but sometimes a little direction helps!
AnonymousDecember 8, 2007 at 8:50 am
There’s a liaison in Iowa whose little kid had GBS as a toddler. The liaison and her husband are both physical therapists, so they recognized the symptoms and got him the help he needed. Her name is Kari, and her number is: 515-964-7386. I bet she’d be able to help you a great deal!
December 8, 2007 at 1:47 pm
I understand your indecision. My son is 10. I will not be getting him any other immunizations ever. If he were a baby, I would have to pick and choose. For instance mmr, measels, mumps, reubella. I would for sure ask that they be given spread apart if I did decide to get them. First I would investigate the illness itself. What is the big deal about chicken pox, we had them. I feel some of these immunizations are for modern day conveience so that we don’t have to stay up at night or miss work when our children are home. People died of measels before because we did not have tylenol or other drugs. I was so surprised to learn that “scarletina” actually is scarlet fever, we had that, it came with a sore throat followeed by high fever. We took tylenol. In the olden dies, people would die. You get the point, some immunizations are mereley convenience.
Another thing to consider, since most children do get immunized, your child would be protected by herd protection. Now if everyone starts refusing immunizations, that is another story. FORGET ABOUT THE FLU SHOT!!!!!!! or pneumonia. There are drugs to take if you get it. There are even doctors on this site who have gbs from flu/pneumonia shots.
Being that your child is young, communication is difficult. Watch vigilantly to make sure weakness does not come back. Make sure he is making his milestones in the fine motor skills as well as large. Your vigilance is your best defense.
If you want to talk, you can pm me your phone # and I will call you!
Dawn Kevies mom
December 8, 2007 at 1:51 pm
I had tons of spelling errors! But I did think of one more thing. If you are planning to get any immunizations, make sure they are the ones WITHOUT LEAD! Also, if your son had ivig, there is a certain amount of time you have to wait AFTER treatment before you can have an immunization in order to benefit from it. Well, I guess that was two more things!!
AnonymousDecember 8, 2007 at 6:56 pm
You guys are awesome! Thanks for all the info. I haven’t thought about the lead thing! We have put all immunizations on hold until I make any decisions. I will weigh the pros/cons of them. Also, good idea on spreading out the shots they combine, I can see how that may increase Tucker’s risk. He did do ivig, our doctor recommended waiting a year to start any further immunizations. By the way, don’t worry about the spelling errors, I’m a teacher and make them ALL THE TIME! Tucker still gets very tired but is playing hard when awake, will this fatigue continue forever? He sleeps 12 hours at night (the whole night goodboy!) and a 2 1/2 nap during the day. I think that may only be a little more than normal though. He continues to be very clutzy, its cute, but he falls a lot! I guess I will have to wait and see! Thanks for the number, I’ll give it a shot! I’m glad that everyone is doing well and appreciate the support!:)
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