Re: Re: .. GI/Immuno link/ long intro..new member

[Guest guest]

Hi, I am, Lee Anne and new to this group. I have four children who all

happen to have chronic health issues. , 23, with chronic late lyme

infection, asthma, GERD, IBS, hearing loss due to otosclerosis/unaided, and a

visual

impairment complicated by her neuro lyme infection but originating from

congenital strabismus(multiple corrective surgeries), she has a long complicated

story all her own.., is 12, was a surviving twin, brother demised at 20

weeks gestation, Mandy had IUGR, I had unknown coagulopathy that caused

placental dysfunction, Mandy had bilateral club feet, has GERD, was originally

thought to have celiac due to positive TTG tests etc but biopsies did not show

celiac she is diagnosed eosinophilic esophagitis, gastritis(an autoimmune GI

disorder, hypothyroidism, peripheral neuropathy, osteoporosis, joint hyper

mobility, spondylolisthesis, mild scoliosis, mild asthma, is 8 y/o,

and

also has the osteoporosis, hyper mobile joints, hx of multiple

fractures(left forearm 3 times, leg tibia fibula-lower leg, finger & toes),

Sammi also has

asthma and severe GERD, small bowel dysmotility, colonic dysmotility/pseudo

obstruction, has a GJ tube for J hydration and feeding, and has issues with

small bowel bacterial overgrowth as well.

Last but most definitely not least; my reason for asking to join this list

is my wonderful red headed son who is 10 1/2 y/o. Matt has shared

issues with his sibs and some of his very own. also has the joint hyper

mobility, mild scoliosis, a hx of a few fractures(foot, right arm and left hand

pinkie),he also has migraine, GERD and eosinophilic gastritis and colitis.

He also has multiple anaphylactic food allergies, environmental allergies, 3

abx allergies, severe asthma, history of recurrent sinus infections,which

thinking about all three of the kids have or still struggle with (we just

treated an unknown serious sinus infection in only found because a brain

MRI ordered by her neuro picked up and described it as a serious sinus and

parasinus infection). averages 4 sinus infections a year, typically

accompanied by cold or bronchitous/pneumonia like infections that trigger his

severe asthma that has been pretty unresponsive to large dose many weeks of

steroids. Recently we switched pulmos and the new one was very disturbed by the

toxic and seemingly inefficient use of steroids and put him on nebulized TOBI

300, a nebulized antibiotic used a lot with CF folks. He has had two asthma

flares since it was ordered one in April with high fever, and a lot of

congestion and wheezing and much to my surprise the TOBI did seem to kick in

and

shorten the flare, no steroids, again in May he flared and again the TOBI

seemed

to help. We began checking his immunity this past February when he had his

third sinus infection and athma flare since November and had already been

treated six weeks of antibiotics, over 8 weeks oral steroids, nebs every 4 hours

round the clock..etc...I was disgusted and suggested to ped as this happens

every single year from late summer to late spring maybe we should check his

immunity. His IGG has now been tested 3 times since then and all come back in

the low 500 range 510 to 530. His IgG subclasses repeatedly come back abnormal

low for IgG 1 and IgG 2, the other subclasses are in range. Oddly for such an

allergic kid his IgE only came in at 23. The other IgA and IgM were in

normal range. They drew titres for Diptheria Tetanus and pneumococcal, his

tetanus was undetected, diptehria very low and pneumococcal was unprotected

with

one of 12 possible antibodies found . He was re-vaccinated and the 3 week post

titres were drawn now we await the results. His allergist finally seems to

think maybe I am not crazy and this poor kid has an immune issue and told us to

go ahead and schedule an immunology clinic appointment while we wait for the

post vaccine titres. In the meantime this past April his neuro decided to

increase his Topomax for migraine fro 25mg twice a day to 25 and 50mg...after a

few weeks his energy dropped, appetite dropped and he became depressed. I

have been back and forth with the NP and worried about the depression and

sadness and finally we weaned off his periactin and lowered a little the

Topomax..to 30 and 30mg..twice a day..after a week of seeing only worse and my

normally buoyant happy kid really in the dumps I took him to the ped.He is

pale, has

bruises all over his arms and legs..but he is a very fair skinned kid and

its very easy to see blood vessles on his face, chest etc..sooo I have assumed

bruises were due to the connective tissue metabolic bone issue...His ped sent

him for blood test, a bleeding time and chest x ray.

He flunked the bleeding time, at 15 minutes out they stopped the test, steri

stripped the scratch and put a dressing on it. His platelets came back

normal and other PT PTT all normal. SO now we have a new mystery, explains why

he

bruises but..it seems he has a platelet dysfunction per his ped and other

docs. So as I asked is there a relationship??? I mean how many unconnected

things can one kid have?

Sorry for the long winded intro and vent but sure would appreciate any words

of wisdom and experience..thanks for readin this far!!!

Lee Anne