Re: Medical Issues, please help...

[Guest guest]

Wow, that is a lot of issues for a young guy. I'd find a good pediatric

rheumatologist and start there. I was told by my dermatologist that blood work

done should be sent off to a specialty lab (he came from s hopkins and they

have an immunology lab).

I will keep this guy in my prayers. Keep us posted.

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at Blue Technik <nanc.nels1@...> wrote:

>Hi all,

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>I am posting on behalf a friend with a 13 yo boy with Down syndrome. Any

>help is greatly appreciated.

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>Kind Regards,

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> mom to Bridget, 18, ds, in MI

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>Over the last two months, we have had weird medical symptoms that seem to be

>independent of one another but all came on at the same time. I have been

>referred to Specialists to help with each symptom, but no one to address all

>issues overall:

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>* Impacted dandruff that causes his scalp to bleed and he is loosing

>hair (we now have a special oil and shampoo that appears to be helping and

>his thyroid levels are normal).

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>* Hands and feet are turning purple during periods of stress and

>coldness (we now know its Reynaud's Disease and not his heart)

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>* He began to have head ticks (think Tourette's Syndrome and you will

>picture what I mean). These ticks start around 5pm each evening and his

>eyes go independent of one another when it happens. He may have up to 20

>ticks in one hour. I don't know what these are yet. The Dr had me video

>tape them so they can assess if they are true ticks or mini seizures.

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>* He has had a tendency towards choking for about 9 years now and for

>all of this time we thought that it was attributed to low muscle tone and

>the difficulty moving food from front to back when eating. It was not

>uncommon for it to take 1 hour for him to eat dinner. This all changed when

>we had to call 911 twice in one week because he couldn't dislodge the food.

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>o So the Peds Dr referred us to a Gastro Dr who ordered a barium

>swallow that showed normal (except the transfer of food which was slow).

>They never even saw the mass in his throat

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>o The Gastro Dr. then ordered a esophageal scope test and immediately

>put us on a liquid diet. During the initial scope they found what they

>thought were tumors in his throat and couldn't complete the scope that day.

>They scheduled another scope the following day and determined that he had a

>large mass in his throat (about the size of an adult thumb nail) and a

>stricture in his esophagus. They also did a nuclear scan to determine what

>the mass was. They didn't know if it was a tumor, extra tonsil or a part of

>his thyroid. They referred us to an ENT to do the operation to remove the

>mass ASAP. So far all the biopsies have come back normal for GERD, cancer

>and Celiac.

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>o The ENT removed the mass, but didn't feel comfortable addressing his

>esophagus issue since it would require a feeding tube, ICU, etc. They

>determined the mass was an extra tonsil and removed the mass from his

>throat. They did not touch his other tonsils since the recoup time would be

>7 days for a child his age. They also cleaned his ears and mentioned that

>he has been clinically deaf for about 6 mos in his left ear. We were then

>referred to a Peds Surgeon to address his esophagus.

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>o The Peds Surgeon used words like " rare and undocumented " - which

>never makes anyone feel good. They consulted Children's Hospital to do

>another scope test and determined that His esophagus did not have a

>stricture, but that the upper part is narrowed and malformed. It normally

>takes them approx 3 mins to get into an esophagus and it took them 15 mins

>to get into his. They performed a dilation of the esophagus and are going

>to see if it helps. They also said he is having esophageal spasms and has

>an esophageal motility issue.

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>o We wont know any more with regards to next steps until next week.

>We are just now getting back to normal, soft food and he has lost 10 lbs

>(which is a lot for his little frame). Next step options include: another

>dilation to the esophagus or the cutting of the narrowing to see if there is

>an improvement.

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>I have found that skin issues, Reynaud's Disease and esophagus issues are

>all symptoms of Scleroderma, but I haven't had a chance to ask the Dr about

>all of this yet. I find it extremely weird that all these symptoms have

>started right about the same time. None of these symptoms can be traced

>back to DS in anything I have read so far.

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>We are over the edge with all sensory input. He won't tolerate clothes

>after the late afternoon (which makes dinner time a little awkward, lol)

>walks around with a terry cloth towel against his head with an ice pack in

>it, etc. I'm hoping that we can get him back on track very soon.

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>Any input or experience, no matter how strange would be appreciated.

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