hi angel & welcome,

take him off the neurontin & if his headaches & vomiting goes away, you know the cause. other neurological pain relief meds you can try are elavil, topamax, lamictal, trileptal, keppra, or cymbalta. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Angel,

I was given Neurontin after my diagnosis with GBS and I ended up having severe headaches (worse than any migraine I have ever had). I was also on an anti-nausea medication so at least I wasn’t vomiting. Eventually I also started developing hives and severe chest pain. I was taken off Neurontin and eventually ended up taking Lyrica which is the only pain-type medication that I can tolerate.

As Gene suggested, talk to the doctor about stopping the neurontin and see if that relieves the problem. There are many alternatives available and perhaps one of those will work better for your son.

My prayers are with you and your son… please let us know how things work out.

Mason was admitted to the hospital Sat for severe headachs, stomach pain and dehydration. The dehydration was part from the vomiting and dry heeves he had the night before.
The doctors did an Xray of his stomach and found a xlarge gas bubble. The bubble looked like it took up half of his stomach. They could not belive it. He also had a blocked colon L and R. They gave him a shot of Morphin at 7pm sat night. At midnight they put a feeding tube down his nose. They fed some medication threw the tube.
Sun about four, they pulled the tube. He was still was so sick. I had not seen him that sick since he first was diagnosed with this disease. They gave him a dose of Lyrica. Within an hour he was his old self. He was smiling and happy. I was so happy.
The doctor took Mason off Neurotin he also changed his amitriptoline to every other night.
The meds he changed him too: Lyrica
Miralax
Predisolone
Levisin
Cyproheptal
Amitriptyline
Trish

For what it is worth, I also struggled with Neurontin and found out through trials that my body would not accept the medication. Glad to hear the docs are working with you to find a better solution for your child. Take care.

doug

Why is your son on Predisolone? Steroids are not recommended for GBS. They have alot of detrimental side effects. With the nerves to the bowels being affected your son will have digestion/elimination issues. With the toxins returning into the system, instead of being eliminated with regularity, headaches and stomach aches will not be uncommon.

I wish your son ‘well’ and for you, strength for this journey with him.

Heather,

Just wanted to say welcome and that I hope Nathan bounces back quickly. There are a few other parents of young children who have GBS that post here, so hopefully you can connect with them. Take care, we are all here to help however we can.

Jerimy

hi heather & welcone,

mostly time heals nerves. resting is important during this time. take care. be well.

gene gbs 8-99
in numbers there is strength

[url=www.gbs-cidp.com]Pam’s site[/url] has an article about 13-year-old who had Guillain-Barre as a three year old. The original article has an email address for the reporter. Perhaps he can put you in touch with the family?

[url=http://www.gbs-cidp.com/ans.php?readmore=65]Teenager continues to beat odds of early childhood illness[/url]
By [EMAIL=”neighborhood@pbpost.com”] Randall P. Lieberman[/EMAIL]
Palm Beach Neighborhood Post

Second, if you haven’t found the [url=http://www.gbs.org.uk/]UK site[/url], it has a [url=http://www.gbs.org.uk/acute.html]number of PDFs[/url] related to GBS which are helpful, including one on [url=http://www.gbs.org.uk/info/afterdiet.pdf]GBS and diet[/url] and one on [url=http://www.gbs.org.uk/info/childhood.pdf]GBS and childhood[/url]

Good luck!

Dear Heather,

I’m sorry to hear that your son is fighting GBS. My heart goes out you as my son is the same age, 4 on June 13th. I had GBS as a teen, he’s fine.

I was going to post the same link as Olav, the UK Support Group’s PDF on diet is excellent!

I also wanted to address what the doctors told you though. What they told you isn’t set in stone! I was told I would walk 2 or more years after my tests… but was walking within months. Your son’s odds of healing and walking are so much greater than a full grown person (with more myelin to regenerate). Stay strong, and please stay in touch to let us know how your little boy is doing.

Dear Heather,

It is the Omega-3 fatty acids in the fish that are good for the myelin and nerves. Omega-3 are the basic building blocks for the myelin sheath, nerve tissue, and brain cells. It is concentrated throughout the food chain, but is most abundant in the oils of cold water fish such as salmon, sardines, herring, cod and mackerel.

If you are buying Omega-3 in capsule form try to get a brand with the [U]fish oil coming from heads and skins,[/U] with no fish liver oil. Fish liver oil, in addition to containing a rich source of Omega-3, also tend to collect toxins in the environment like mercury and arsenic. A good product will get its fish oil from heads and skins from an unpolluted environment, and will do toxicity checks on every batch to make sure the product is safe.

As Gene said, time is still the best medicine. Wishing Nathan, you, and your family the best.

Warmest regards.

Jethro

[QUOTE=hla1985]My son Nathan who will be turning four in June has been home from the hospital now for three weeks. He was first diagnosed with Cerebellar ataxia over Easter. However his condition worsened and the doctors changed there minds and diagnosed him with GBS. My son is the youngest case they have seen.We saw our doctor for the first time yesterday and we were told that hopefully by the end of the year he will be walking. I have been doing some reading on the Internet and read that feeding him fish will help heal the myelin sheath faster. Has anyone else heard that? I am just looking for some ideas from other parents like games to play and foods to feed him. I would love to talk to another mom/dad who has/had a young child with GBS
Thanks
Heather[/QUOTE]
I am sorry to hear about your son. Three weeks ago we found out what GBS is. We have an 8 year old boy who was running and playing one day and w/i 3 days was in a hospital bed.

We had the spinal tap done, emg, and he had all the symtoms which confirmed him having GBS. We had 5 treatments of IVIG (week 1), was then sent to rehab for therapy, then his body became weak so we went back to the ICU of the hospital and had 5 plasmaphereis treatments done. In our sons case the Plasma treatment seemed to work. It could also be that he was in his 3rd week of the illness and 90% of all patients are at their weakest. He had his first treatment last Friday and by Sunday evening he was lifting one of his arms and 3 days ago was able to lift his other hand. It is a slow process.

I have not heard that about the fish. I will try to ask our Pediatric Neurologist and respond. We are located in MN.

Heather,

I am so sorry to hear about your son Nathan. I remember when I was first sick I said to my husband if I have to have this instead of a child then I am happy to do so. I think it is a terrible illness and I feel upset when I hear of children contracting it. My thoughts are with you and your family.

I hope Nathan soon picks up.

Best Wishes
Debbie

so glad to hear he is showing improvement. this is a scary illness for us as adults but it has to be even scarier for a child. give nathan lots of hugs and kisses from his gbs family and always know we are here for you.
take care

sherry price
Southeastern Ohio Liasion

Heather I am so happy to hear that, progress is good at this point. Hang in there and take care of yourself.

Jerimy