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MPPH Syndrome

What is MPPH Syndrome?

MPPH (Magalencephaly, Polymicrogyria, Prodadactyly & Hydromcephalus) Syndrome.

 

MPPH (Magalencephaly, Polymicrogyria, Prodadactyly & Hydromcephalus) Syndrome.
Prevalence Information of MPPH Syndrome has not been added yet.
Synonyms for MPPH Syndrome has not been added yet.
Cause of MPPH Syndrome has not been added yet.
Symptoms for MPPH Syndrome has not been added yet.
Diagnosis of MPPH Syndrome has not been added yet.
Diagnostic tests of MPPH Syndrome has not been added yet
Treatments of MPPH Syndrome has not been added yet.
Prognosis of MPPH Syndrome has not been added yet.
Tips or Suggestions of MPPH Syndrome has not been added yet.
References of MPPH Syndrome has not been added yet.
Progression Created by alanawood
Last updated 5 Feb 2017, 09:38 AM

Posted by amandine
5 Feb 2017, 09:38 AM

Hello, my name is Amandine and i live in Normandy in France. I've a little boy who has mpph syndrom. His name is Basile and he is 13 month. He doesn't sit alone and he doesn't speak. In my country, there is nothing about this syndrom It's a very very rare desease. I want to speak with people who have child like my son with this syndrom. I'm sorry for my english I don't speak very well. If you are ok I want to enter in your group on Facebook please. Thank you

Posted by sarahwinsome
30 May 2016, 11:08 AM

Hi - I'm sorry to hear about your son's diagnosis. My daughter is 18 mos and has MPPH. There is a Facebook group if you're interested in joining https://m.facebook.com/profile.php?id=459569770779913&tsid=0.9593255908694118&source=typeahead Good luck! Sarah

Posted by alanawood
29 May 2016, 10:47 PM

Hello! I am new to this page, and our son is 11 months old and just diagnosed with MPPH. I was just curious to see if there were any updates as to how everyone's child is doing. None of our doctors can really tell us what to expect as far as his development, so I just wanted to see if anyone had any insight!

Updates Created by BabyBeau2015
Last updated 21 Apr 2015, 02:27 PM

Posted by BabyBeau2015
20 Apr 2015, 03:10 PM

Thank you! We were initally diagnosed with just the PMG but the MRI findings came back saying MPPH is probable. Obviously we'll know more when he's here in a few weeks. Thank you for the info. I'm on the PMG FB pages so I'll be sure and look up the MPPH page.

Posted by Becksboo
20 Apr 2015, 07:16 AM

Hi, There is a fab page on facebook with lots of info and support. Its under MPPH Syndrome. Let me know if your having trouble accessing it xxxx

Posted by BabyBeau2015
19 Apr 2015, 05:56 PM

Hi there! My son was just recently diagnosed with Mpph via fetal MRI. I just wanted to see how all of your children are progressing. How was the first year? I think we're moving forward with the c-section in 2 1/2 weeks. I'm pretty nervous and not sure what to expect.

Any info? Created by vford
Last updated 25 Jan 2011, 06:06 PM

Posted by vford
25 Jan 2011, 06:06 PM

I am actually located in Utah. Where are you located at? My baby is 12 months as well. He just started sitting unassisted this week. However it is only for maybe a couple of minutes. He is no where close to crawling or walking as well. Our geneticist is looking at him having MPPH with MCM as well. However he does not have any capillary malformations. He also has not had hydrocephalus, just very large ventricles. My son currently sees a physical therapist twice a month, an occupational therapist, as well as a developmental specialist. He also see's a neurologist as well as orthopedic surgeon. I appreciate your link the the facebook group. I will try that and see if I can get some more help and answers as well.

Posted by roxy_billy_19
23 Jan 2011, 12:11 AM

Hi my name is bec my son Koby is 12 months and we have been told he could hav MPPH / M-CM. Where bouts are u located? My son has epilepsy and now has a shunt inserted in December he cannot sit unassisted and no were near crawling or walking! I hav started him in physio to see if it helps and I had got no info from Docs to go to one so I went of my own back and she said why didn't I come earlier well no one told me too!! Cause it is such a rare condition I don't think Docs know how o treat it :-( I hav found a great support group through facebook any questions I hav they are happy to answer them. This is the link: http://www.facebook.com/group.php?gid=127511855574&ref=ts hope this helps

Posted by vford
21 Jan 2011, 09:43 PM

I noticed this community had a few other members. Have any of you had any head way getting a firm diagnosis? Also how old are your kids? My baby turns one this month and I am trying to get a better of idea of possibly what the future holds for us. We were told there was a possibility our baby would not walk, just looking for any help or answers! Also have any of your docotors mentioned the combo of the MPPH syndrome with MCM syndrome?

5 year old son Created by mchavalia
Last updated 30 Jan 2011, 05:45 PM

Posted by mchavalia
30 Jan 2011, 05:45 PM

We seen a Dr. Dobyns in Chicago who was heading up a brain anomoly clinical study. The last I heard he moved to Texas to study children with autism. We did go to a genetic doctor while we were in the initial process of finding out a diagnosis. Looking back I am not sure we really gained much knowledge from the genetic testing. The MRI and the neurologist appointments are where we gained the most information. After our first diagnosis of lissencephaly we went for a second opionion, which was a waste of time and money, as that particular doctor had no clue what we were looking at. Dr. Dobyns was our third contact and we are still unsure if the diagnosis, signs and symptoms truely fit our son. We just encourage him every day to do his best and pray!!

Posted by vford
29 Jan 2011, 09:30 PM

Mary, I enjoyed reading your story. I think I am on the other end of where you are though. Our baby is just now a year old. Since he was born he has kind of puzzled doctors as to what was wrong. We are still searching for a firm diagnosis as he does not meet the criteria for MPPH or MC-M 100%. So I am sorry to say I don't think I know any more than you already know. Can I ask who you saw in Chicago to get the diagnosis? My husband and I are wondering if we need to look for a geneticist who knows a little bit more about the syndromes they are considering.

Posted by mchavalia
27 Jan 2011, 07:41 PM

Hi My name is Mary and my son, Ethan is now 5 years old. We reside in Michigan and since he was about 11 months old we had noticed developmental delays. We received early intervention services for OT, Speech and PT. I can tell you that, at 5 years of age, he is already proving himself. He did not walk until he was two, did not really talk much at all until 3-4 years and he currently has to be reminded to use sentences. His speech is not always real clear. He still drools as he has low muscle tone through out his body. Cognitively he is right in line with what a child his age should know as far as letters, numbers, opposites, colors, etc. Initially we were told he had lissencephaly. With the information we obtained online we just didn't feel it fit him. We took him to Chicago last year where the MPPH diagnosis was made. He also has a Chiari Malformation Type 1. We just took him for an MRI and there is signs of a reduction in cranial sachral fluid, but nothing to be concerned about at this time. As many doctors have told us, the future cannot be predicted, even with children who have no anomolies. We were told that Ethan's large head size may be the reason he is doing so well. Not sure what that is all about. Early intervention was the greatest program - if you have one in your state do all you can to take advantage of those services. We also went through genetic testing and had blood work sent for a clinical study. We haven't heard anything back, but the doctor told us he believed this syndrome to be the result of a new genetic mutation. I would be interested to know if any of you have received an official reason.

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Je suis la maman d'un petit Basile de 13 mois atteint du syndrôme MPPH. J'habite à Caen, en France.
Hi my daughter Millie has been diagnosed with mpph syndrome
Baby Beau is almost 2 and doing amazing! He's delayed and not sitting or crawling yet but with therapy he's making good progress.
Joining the network for my 17 year old son with MPPH syndrome hoping to connect with other families to share ideas, thoughts and concerns.
Hi, <p>&nbsp;</p>My 9 month son was diagnosed with MPPH at birth and now I am just looking for similar families in my area..
I am a mother of five, and the newest addition to our family has been diagnosed with MPPH. His name is Jonathan and he was born in July, 2014.
Our youngest daughter was born and ended up being hospitalized five days after birth. Once genome sequencing was finished it was determined that she has MPPH syndrome. Fortunately, at this time she...
My son was diagnosed yesterday with MPPH syndrome. His name is David & he is 2yrs 7 months old. He's currently getting speech, physical, and developmental therapies twice a week each. He's amazing,...
I am a RN in graduate school working on my Practicum and trying to learn more about MPPH to provide edcuational opportunities for disease management.
My son was diagnosed with MPPH syndrome when he was 2 years old. We live in St. Louis, MO.
I am the mother of a 2 yr. old diagnosed shortly after birth with MPPH Syndrome. Apparently it is so rare there are no specialists, support groups, etc out there to connect with. Jordan has amazed ...
My baby boy is almost a year old. He was born at 33 1/2 weeks weigh over 6 lbs. He was in the NICU for 7 1/2 weeks with various problems. Our geneticist is currently looking at MPPH as a possible d...
I have 3 children and all three have various special needs including deafness, microcephaly, polymicrogyria, sensory processing difficulties, and developmental delays.
My name is Rebecca I am the parent of Koby. <p>&nbsp;</p>We are located in Australia <p>&nbsp;</p>We are in the process of test to diagnose MPPH in my son. <p>&nbsp;</p>He has extra digit on his...
I am a mother of a 4.5 year old who was diagnosed with MPPH Syndrome. Although he does not have all the syndromes included in this diagnosis, he does have two which are the large head and the poly...

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Discussion Forum

Progression

Created by alanawood | Last updated 5 Feb 2017, 09:38 AM

Updates

Created by BabyBeau2015 | Last updated 21 Apr 2015, 02:27 PM

Any info?

Created by vford | Last updated 25 Jan 2011, 06:06 PM

5 year old son

Created by mchavalia | Last updated 30 Jan 2011, 05:45 PM


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