Desperate Mom and Dad of 11 year old

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Desperate Mom and Dad of 11 year old

Postby josuesmom » Mon Jan 10, 2011 3:17 pm

Hi all,
My son, Josue, had Chiari decompression surgery done on March 15th 2010 he was presenting with severe headaches and various neurological symptoms. He had his surgery done at Barrow's neurological institute. the thing is, that he has not had much improvement since surgery and it's been nine months now. in fact the last few weeks have been pretty brutal when it comes to headaches. His neurosurgeon pretty much washed her hands of his case and told us that she had not guaranteed that his symptoms would go away (we did know this) and to take him to his neurologist for further evaluation. his neurologist has in the past put him on several medications Amitryptaline (no relief), Gabapentin (severe mood swings but no pain relief), today we went in to talk to her (neurologist) regarding severe headaches and lack of sleep among other things hes been having in the last few weeks. She prescribed Steroids, Depakote and Indomethacin while also suggesting that it's due to migraines, first of all, we are not comfortable giving him so many meds I mean steroids? and we've already tried anti-seizure meds. secondly, we are really upset about the fact that since she appears to be running out of answers she is suggesting he is 'just" a migraine sufferer and to give him a bunch of meds and to take him to a psychiatrist (due to lack of interest in normal things on his part) which i happen to think is due to him being an 11 year old who used to be involved in many sports and living with chronic pain) We are to the point where we are willing to travel (we are in Arizona) to see a Chiari specialist but we are not sure where to go, or how they would be able to help him.

If anyone has any advice or suggestions please let us know... we are not willing to have our son dismissed due to their lack of care or specialty and subject him to a lifetime of pain and medication testing.

Thank You.
Esmeralda and Troy, Josue's Parents.
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Re: Desperate Mom and Dad of 11 year old

Postby memom » Mon Jan 10, 2011 7:11 pm

Hello to all.

I am sooo sorry that your son is having all these problems. My daughter is 18 months post decompression and still suffers. We have bounced from one specialist to another with no one offering any real help. What has worked for us is the following:

- Aqua therapy in a pool heated to at least 94 degrees - Pediatric Doc wrote prescription for this. For some, land therapy is too much impact on the spine and
neck. Make sure they stay away from the neck. Our PT is so wonderful with our daugther. We went to two others before we found her.
- Physchologist counseling to learn how to cope with pain and depression. We have not put our daughter on anti-depressants because she did
not have depression before her chiari problems. She was (and still is from time to time) depressed because of her situation. She has learned how
to handle this. A good counselor will help alot - our thoughts were if this did not work, we would consider anti-depressants later.
- We had to learn not to over schedule MaryEmma. When we tried to keep her "involved" like a normal kid, she had lots of problems. It is hard to do this
but we are finding balance. Mainstreaming can be too much for some. Get an IEP if you do not already have one.
- MaryEmma's pediatric Doc put her on Melatonian to help her sleep. It worked like a charm for her. She takes 1.5mgs every two or three nights. It
has helped our entire family!!!
- MaryEmma has been outfitted with orthodic shoes/inserts. This has helped decrease the number of headaches and backaches. Pediatric doc wrote a
prescription for these.
- MaryEmma is on celebrex around the clock to help with pain and relieve swelling. She also takes omeperzole to control reflux.
- I journal her symptoms looking for patterns and triggers signs.
- She practices art therapy and listens to her favorite music when things are tough. Music and art help take her mind off the pain.

There are sooo few doctors out there to help post surgery chiari patients. We see a NS in Washington D.C and live in Florida. We are going to see Dr. Francomano in Maryland for further help. Our NS has told us that many chiari kids have other issues such as Ehlers Danlos. I hope this helps, keep us posted.

Praying for your entire family,

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: Desperate Mom and Dad of 11 year old

Postby josuesmom » Mon Jan 10, 2011 8:46 pm

Lauri,

Thank's for your response.
It has become increasingly frustrating to watch my child go through this and feel like no one involved in his healthcare really gives a damn.
We will absolutely look into the aqua therapy for Josue, anything to keep him from having to be on so much medication.
I'm also glad you mentioned the Celebrex for sleep, Josue has been having a really hard time staying asleep during the night which in turn makes for worse symptoms during the day due to lack of sleep.

Thanks for the prayers and I hope that everything turns out better for your little one.

Esmeralda.
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Re: Desperate Mom and Dad of 11 year old

Postby memom » Mon Jan 10, 2011 9:48 pm

Esmeralda,

Please note that MaryEmma is on Melatonian for better sleep. Celebrex is for pain and swelling. Good Luck and let me know how things go.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: Desperate Mom and Dad of 11 year old

Postby josuesmom » Tue Jan 11, 2011 11:47 am

Lauri,
Oooops was re-reading your post last night when I realized that...
I am going to contact his neurologist today and see what she thinks about Celebrex for Josue instead of all this other stuff she's trying to get him on.
I am also thinking of finding a new neurologist because it seems to me that she is not adressing the fact that his headchaes get worse while laying down (severe headaches when he wakes up), and thats how everything first started before he had surgery. I am becoming concerned about ICP due to the fact that he can't even hiccup, cough, laugh, sneeze etc. etc. as of lately because it hurts his head.

Esmeralda
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Re: Desperate Mom and Dad of 11 year old

Postby memom » Tue Jan 11, 2011 12:31 pm

Esmeralda,

Does he have a syrinx? Also, has he been seen by a rhuematologist? My daughter has Ehler Danlos which is a connective tissue disorder. This is causing some instability which causes pain. I cannot say enough about orthodic shoes! They really make difference for her. On days she does not wear them, she is in pain. On the days she does wear them, she may still have problems, but not as bad. Did the NS open the dura? Keep up the good work - we are the only ones fighting for our kids!

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: Desperate Mom and Dad of 11 year old

Postby josuesmom » Tue Jan 11, 2011 12:50 pm

Lauri,

Yes he does have a Syrinx.
They opened the dura and used a synthetic patch. I will talk to his doctor about orthodic shoes.

Esmeralda
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Re: Desperate Mom and Dad of 11 year old

Postby youngwife » Tue Jan 11, 2011 2:30 pm

My daughter is 16, now, and began symptoms at the age of 12, in 2007. Her decompression surgery was in 2007. She has Chiari and Syringomyelia, and she has had a tethered cord release surgery as well.

Today, Rachael continues to live with daily, chronic pain. At this point, we are remaining hopeful that someday, we will find *something* (surgery, or other treatment) that will improver her quality of life and comfort. But, it's mostly about pain management and survival. And that is a very, very sad thought for me.

She is currently on:

Elavil
Neurontin
Seroquel
Savella
Lortab
Flexeril
Vitamin D
Miralax
Pyridium
Zantac
Zyrtec
Fish Oil

We are hoping to soon find a neuro__?__ that will let her try Topamax, because she is having more trouble with raised intracranial pressure, and Diamox is not helpful for her at all.

I am very sorry that your son is dealing with so much. And, yes, children and adults are going to be depressed when their lives are filled with suffering and pain. A counselor has been very helpful for Rachael. She was able to find one that also dealt with chronic pain, so they connected right away.

(((HUGS))) This is just a very hard condition to live with, since living hurts with Chiari and SM! :cry:
I pray that you are able to find a doctor to help you.
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: Desperate Mom and Dad of 11 year old

Postby josuesmom » Wed Jan 12, 2011 11:02 am

Thank you youngmom

It is extremely frustrating, good thing our children have parents that are trying everything we can to improve their quality of life.
Thanks for your responses, it feels so good to be able to chat with people who can relate and understand.

Esmeralda
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Re: Desperate Mom and Dad of 11 year old

Postby Sara » Tue Jan 18, 2011 8:10 am

Ask about intracranial hypertension. a dilated eye exam will show papilledema, which is one sign. High ICP has to be diagnosed by measuring csf pressure and is invasive but can cause serious problems if untreated. Symptoms includes severe headache- especially upon waking, nausea and vomitting. blurry vision or reduced visual field are late symptoms
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