hypophosphatasia? and chronic cough question

[mommyjamieof2]

I had some blood tests don e to test my thyroid
one of the tests I have low levels of alkaline phosphatase. This is the information I found. A genetic condition called hypophosphatasia which results in bone deformities.
http://ghr.nlm.nih.gov/condition=hypophosphatasia (http://ghr.nlm.nih.gov/condition=hypophosphatasia)

anyone familiar with this? I am wondering is this the answer to my 6 year olds cranio and my 3 year olds teeth problems?

My chiro just told me I have curvature of the spine and my hips are not aligned also.

My other Question is has anyones child experienced a chronic cough due to the cranio? My guy has had this dry cough for 6+ months we have been to all sorts of doctors but have not gotten anywhere. ENT's said asthma allergies gerd tick but no medication they tried helped any of it. saw a nuerologists who said unless it gets worse he is fine and did not recomomend surgery as his forehead is mild. I am so frusterated and lost as what to do at this point he is scheduled to have his adnoids out in 3 weeks and I am not sure its going to make any difference.

[*jules*]

no knowledge or adivce about this...only hugs and prayers!

[grayridge]

Jimmy has had a constant cough since he was three weeks old. He was finally Reactive Airway Disease (Asthma), GERD, and obstructive sleep apnea. He has mild metopic and surgery has not been required. He has been using Flovent, 2 sprays in the morning and two in the evening and has not had a cough since using this inhaler for about one week. He is no longer on the nebulizer and does not have many episodes of panting and being breathless while playing anymore. Have you been to a pulmonologist for your little one? That might be a good doctor to see for the coughing.

[mommyjamieof2]

Yes, I have he is said to have reactive breathing and allergies we are now once again looking at taking out tonsils and adnoids next month after putting it off last time. but he has gotten sick so much this winter strep croup sinus infections. But for some reason I just don't feel at peace with this decision as I didn't before hence the delay. The coughing did settle alot now it is only a few times a day instead of many a hour. I think it is more of a stuff in throat cough light maybe drainage from his sinuses. I am wondering if the cranio is affecting his sinuses?

[Mama.Bear]

I have the spine curvature and misaligned hips also.

Re: your son's coughing, is there any chance he's allergic to cow's milk? My 5 yo son was prone to croup as a baby. We later discovered his multiple food allergies, seasonal allergies and Asthma. We have been less careful with his diet years later because the outward symptoms are no longer visible (facial swelling and rashes etc) if he should consume something made with milk as an ingredient.

FFW: Since Sept he seemed to develop cold after cold which all started with that cough. (Milk can increase mucus production in those who suffer from milk allergies). Our son missed 40 days of school this year because of that cough (which led to sinus infections & pneumonia). Unbeknownst to us, his teachers were making (yep!) our son drink milk every.single.day at lunch even though he brings his own lunch to school.

Since we have instructed the teachers to not give our son dairy of any kind, our son has not been *knock on wood* sick.

BTW, this is not my cranio child but, he had/has positional plagio. and a metopic ridge (non trig)

[craniomommynbaby]

I also have spine curvature and misaligned hips. No matter how often the chiropractor and therapist put my hip back, it comes right out of place again. I am wondering if it is related to my horrible feet or somehow to my cranio syndrome.

[doreen_z]

I have hypophosphatasia - my whole family does (well, my siblings, my mother and uncles though none of their kids do - my mother's father and his father) - my 2 year old was just diagnosed with cranio and is having surgery next week, we think she has it too. We have all had the dental manifestation up until now - the urine test (for my daughter) came back in normal range but her ALP was low (when tested in 2009). The geneticist thinks she must have Hypophosphatasia - the symptoms she had as a baby all fit - clear CT Scan (at 8 months) and an abnormal one now. It is just odd that she has this bad manifestation when the rest of us only had bone density and dental issues (when we were little they thought it was lukemia, etc before they figured out what it was and we were part of a research study at Children's LA).

You mentioned dental issues with your son - Our teeth just came out - literally, we would maybe bite my mom's jeans or barely bump them and then hand them to my mom. I am happy to say we all got adult teeth! I have osteopenia in my hips already. My sister has these odd hooks on her hip bones that are causing a tear and a lot of pain but the doctors do not think it is related. I think they may be wrong. It is so rare that most doctors do not know much about it - I feel like I am far more informed! I have been bring this issue up over and over at doctor appointments and everyone says they don't think it is related, I actually had one doctor years ago tell me Imust mean hypophosphatemia because there was no such thing as hypophosphatasia!!! I searched craniosynostosis (now that we have a name for it in our arsenal) and hypophosphatasia together on google and even I can find information that makes it look like it is very much related - If I can find that info why can't they? Go to thefreedictionary.com and put in Hypophosphatasia - it says that the sutures appear open but are functionally closed and also talks about all 5 types classifications.

When did your 6 year old have surgery? Or has he yet?

I am happy to share any of the hypophosphatasia info I have with you and would love to hear what you find out about its relationship to your son's cranio if any. I would be pushy about the hypophosphatasia, they will say its not related, they should prove it!!! Like I said, my knowledge is limited and I seem to know more than the doctors (which is frustrating). I wish I had pushed harder when my child was 8 months old and we were having problems...I kept bringing it up to the neurologist and he would say it was unrelated (which maybe it was, we have not gotten the DNA testing results back to confirm she has it). Sorry to be so long-winded. I have never been able to speak with anyone else who has had this!

[Carmen77]

[QUOTE=Mama.Bear;213842]I have the spine curvature and misaligned hips also.

Re: your son's coughing, is there any chance he's allergic to cow's milk? My 5 yo son was prone to croup as a baby. We later discovered his multiple food allergies, seasonal allergies and Asthma. We have been less careful with his diet years later because the outward symptoms are no longer visible (facial swelling and rashes etc) if he should consume something made with milk as an ingredient.

FFW: Since Sept he seemed to develop cold after cold which all started with that cough. (Milk can increase mucus production in those who suffer from milk allergies). Our son missed 40 days of school this year because of that cough (which led to sinus infections & pneumonia). Unbeknownst to us, his teachers were making (yep!) our son drink milk every.single.day at lunch even though he brings his own lunch to school.

Since we have instructed the teachers to not give our son dairy of any kind, our son has not been *knock on wood* sick.

BTW, this is not my cranio child but, he had/has positional plagio. and a metopic ridge (non trig)[/QUOTE!]

Very interesting, Mateo has very bad croup, and asthma ( well not dx yet because yes to young but have nebulizer ) very bad allergies! :thinking Makes me wonder if he's allergic to milk. How do u find out? Also I have a bad hip, and awhile back they mentioned something about my spine.

Sorry to steal your thread! Had never heard of any of this till now, wishing you the best! :hugg

[HPPMommy]

Hello MommyJamieof2!

I came upon your post and wanted to let you know my son is 6 and has hypophosphatasia (known as HPP) and I can almost certainly tell you its to blame for your son's craniosynostosis and teeth issues. HPP causes low levels of an enzyme called alkaline phosphatase, which is the enzyme that is partly responsible for bone mineralization. The good news is there are potential treatment in development for an enzyme replacement therapy and so we are very hopeful that there will be an FDA approved treatment soon.

You should know that Shriners Hospital in St Louis has a metabolic bone research center - my son goes there every two years and he receives full care for HPP (xrays, physical therapy, dietary advice, bloodwork, etc.) There are some really important things you should know about HPP and craniosynostosis -- as it can be very tricky and I would suggest you see a specialist in HPP. You may want to have your son's optic nerve checked as well because many times it cannot be seen on traditional scans. They can also provide information about whether your son would be eligible for the clinical trial for the drug in development, etc.

Also I wanted to let you know about our patient group, Soft Bones (www.softbones.org). We have an online forum on the site and we also have a presence on facebook as well and people are more than willing to answer questions and share their stories. We'd love to have you join! :)

Please let me know how I can support you and answer any additional questions.
Deborah